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Mick E on 17 October 2019

Category: Treating CML

Replies: 23

Last updated: 29 October 2019

Nilotinib side effects
by Mick E (Oct 29)

I’m not sure what the PCR figure is now as it has risen over the last few months due to inconsistency of treatment. He mentioned it was at a stage where mutations can occur.
Got to agree

by cmljax (Oct 29)

When I was taking nilotinib twice per day, I took it at 0830 and 2030. I only eat twice a day at around 1200 and 1800, so that was outside the forbidden eating windows, so I was OK there.

by Mick E (Oct 29)

Thanks for the reply!
pleased to hear you have managed to get side effects to a tolerable level!!
very useful to know you are still training as exercise has always been my main life

by David Fitz (Oct 29)

I can also really recommend Carmellose Sodium drops. They are ever slo slightly viscous, so stay in your eyes better than something very watery and really lubricate your eyes.
I bought these
Category: Treating CML

Replies: 23

Last updated: 29 October 2019
ckquinn on 28 October 2019

Category: Drug-food interactions

Replies: 3

Last updated: 29 October 2019

Flu vaccine
by johnw1001 (Oct 29)

Hi,
Never had any problems with any of the flu jabs over the last ten years.The most that happens is a sore arm for a while.
My haema-oncologist warned me never to have any live vaccines though eg

by David Fitz (Oct 28)

Nope, no issues. I got mine a couple of weeks ago. It’s not a live vaccine
David.

by gbatalha (Oct 28)

I got mine last week. Doc said it was ok.

by ckquinn (Oct 28)

Any issues with getting the flu vaccine, thanks.
Category: Drug-food interactions

Replies: 3

Last updated: 29 October 2019
jasonswife1686 on 24 October 2019

Category: Uncategorised

Replies: 8

Last updated: 29 October 2019

Reason for transplant
by cmljax (Oct 29)

Life is so unfair. I have been so fortunate to have had a fast and deep response to Tasigna, but had to reduce my dose 3 times (currently on 150 mg/day once per day) because of bizarre side

by jasonswife1686 (Oct 25)

I have had mutation testing and have came up negative.
We will def keep in touch. I do have a Facebook page and caring bridge set up as well :)

by ColoradoGuy (Oct 24)

Praying for you and I second what other members have already said that a silver lining is that a transplant is the only known cure. Very stressful and I cannot relate but sympathize with you.
I

by Hcs1604 (Oct 24)

This is my first post on the forum but I am struck by how similar your story is to mine, so if I can offer any advice I will happily do so.
I was diagnosed in November 2016 at age 23. I was started
Category: Uncategorised

Replies: 8

Last updated: 29 October 2019
Mick E on 28 October 2019

Category: Uncategorised

Replies: 3

Last updated: 29 October 2019

Nilonotib twice daily
by Mick E (Oct 29)

I’ve never even heard of the term “pharmacokinetics”! I will also have to Google that!
thanks for the reply

by Ben K (Oct 29)

I’m sure if you were interested enough you could locate the data on the pharmacokinetics of Nilotinib. Dose frequency is not a measure of effectiveness. The dose will be determined

by Dustylloyd (Oct 28)

Hi Mick E, I’ve been on Nilotinib just over 4 years on 400 mg twice a day (800 mg) I’ve mentioned this before on Cml Support before and was surprised that a lot of people are on similar

by Mick E (Oct 28)

Why if Nilonotib is more effective than Imatinib is it required twice daily?
i have been looking for information online and as of yet haven’t seen the reasoning for it.
regards
Category: Uncategorised

Replies: 3

Last updated: 29 October 2019
Nshah on 23 October 2019

Category: Blood tests

Replies: 27

Last updated: 27 October 2019

New CML
by Nshah (Oct 27)

Happy Diwali and happy new year to You too.

by Vikram (Oct 27)

Happy diwali and Happy new year.....
Skin whiting.... Problem side effects of IMTINIB......
After 2-3 year diagnosis
Skin whiteing problem normal... (normal skin less whiteing.....)
Don't worry

by Nshah (Oct 25)

Yes exactly.

by Vijay Kumar Verma (Oct 25)

In the word of SCUBA even Cml is boon for us not bane,when we deeply see our underlying health (physical &psycological) issues in relation with cml then we come to realise that it is a message
Category: Blood tests

Replies: 27

Last updated: 27 October 2019
Ben K on 26 October 2019

Category: Uncategorised

Replies: 5

Last updated: 27 October 2019

CML Support Facebook site
by Ben K (Oct 27)

Thanks David :)

by David Fitz (Oct 27)

Thanks Ben,
If it were up to me it would already be deleted but I don’t actually have access to that Facebook account.
Leave it with me and I’ll see what I can do in short time.

by Ben K (Oct 26)

The link is here https://www.facebook.com/pg/CMLSupportGroup/posts/ and the post is a share of a post by Liz Watkins Barton (whoever she is) of a video of "Dr Suzanne Humphries"

by David Fitz (Oct 26)

Can you post me a link to the post? It’s not a page I control but I’ll see what I can do.
David.
Category: Uncategorised

Replies: 5

Last updated: 27 October 2019
mozart8 on 25 October 2019

Category: Drug-drug interactions

Replies: 3

Last updated: 25 October 2019

turmeric not advised with dasatinib
by kat73 (Oct 25)

Supplements are notorious for not being regulated - there could be other things in the capsule. I'm well aware of Scuba's advocacy of it. It has not been put to a good study,

by Vijay Kumar Verma (Oct 25)

Just ask to SCUBA .he will give you solution with the science.

by kat73 (Oct 25)

Just a thought, but maybe your stomach issues are due to the turmeric supplement?

by mozart8 (Oct 25)

hello, i've read a number of posts here about turmeric and dasatinib and what i've read seems positive, especially scuba's posts. i went to see dr mauro (cml specialist) for a
Category: Drug-drug interactions

Replies: 3

Last updated: 25 October 2019
Jason Graves on 22 October 2019

Category: Uncategorised

Replies: 9

Last updated: 24 October 2019

Transplant.
by jasonswife1686 (Oct 24)

Please see my post in the forum called reason for transplant

by David83 (Oct 23)

Hi Jason,
I don’t know if this helps but I had my counts crash when I started on Nilotinib after switching from Imatinib. I had to come off all treatment for 9 weeks mainly due to platelets

by David Fitz (Oct 23)

Even 100mg of dasatinib? That’s a lot for someone who seems sensitive to myelosuppression. It increasingly looks like it might be too much for anyone!
Transplant is no joke. You must exhaust

by scuba (Oct 23)

Jason,
I suffered the same issue - very low blood counts - especially neutrophils and platelets. My doctor is a researcher in the field and worked with me over a year to "condition" my
Category: Uncategorised

Replies: 9

Last updated: 24 October 2019
domonthebay on 22 October 2019

Category: Side effects

Replies: 4

Last updated: 23 October 2019

Dasatinib Side Effects and any suggested remedies or counter agents?!?
by David Fitz (Oct 23)

Muscle pains ... magnesium cream or oil can help if it’s a crappy sort of pain. Personally, I find a long hot bath very helpful and often combine that with magnesium flakes. You can get a kilo

by domonthebay (Oct 23)

Thank you David for your response... I plan to speak with my doctor on both suggestions. Any ideas about what you or others have done for the muscle/chest pains or the itching? I keep

by David Fitz (Oct 22)

Breathlessness on dasatinib warrants a couple of checks ... firstly, you want to rule out pleural effusion, so that would be a quick chest x-ray to rule that out. Secondly, PAH (pulmonary arterial

by Mick E (Oct 22)

I was having unexplained breathlessness even on 25mg. I have since been taken off them but the problem although not as bad is still present. Currently investigating for the possibility
Category: Side effects

Replies: 4

Last updated: 23 October 2019
Damian Gabilondo on 21 October 2019

Category: Uncategorised

Replies: 7

Last updated: 23 October 2019

PCR report 17 months, what awaits me ????
by Damian Gabilondo (Oct 23)

Hello I am from Argentina, the last name is of Spanish / French origin, there are not many with that last name, you must be a good person your oncologist hahaha.
Thank you, try to watch the videos,

by hannibellemo (Oct 22)

Damian, congratulations on your excellent reports in such a short period of time.
On another note, my oncologist's married name is Gabilondo. Her maiden name is Ferrari. She and her husband are

by AlastairC (Oct 22)

Hi Damian,
The explanation of this which worked for me was repeated at this year's UK patient day. The talks are on this link If you scroll down to Prof Richard Clark's talk in

by Damian Gabilondo (Oct 22)

Thank you very much for the answer, I never fully understood what is undetectable in this condition, I suggested that the answers 4.0 / 4.5 / 5 are levels of undetectable or complete molecular
Category: Uncategorised

Replies: 7

Last updated: 23 October 2019
scuba on 19 October 2019

Category: Uncategorised

Replies: 7

Last updated: 23 October 2019

Low-dose dasatinib (50 mg) update
by RC Kirk (Oct 23)

I think you're right about that. The conversion factors to IS do seem to follow some sort of curve. Here's the fine print from the PCR reports:
Methodology:
Total RNA was

by Antibody Boy (Oct 23)

Kirk,
It is possible that your PCR results were determined using external calibrators as opposed to a laboratory specific conversion factor. Labs back then were either "validating"

by David Fitz (Oct 21)

Sounds like a clerical error for that 0.914% MMR declaration alright.
The point in the primer relates to PCRs where there are < 100,000 assays. With more than 100,000 you can have confidence in

by RC Kirk (Oct 21)

I'm pretty sure all of the PCR results came from the same lab, but I could be wrong. I assumed it would be a linear relationship. Here's quote from the PCR primer: "This
Category: Uncategorised

Replies: 7

Last updated: 23 October 2019
Jclmal on 22 October 2019

Category: Treating CML

Replies: 6

Last updated: 22 October 2019

Gleevec 11+years knee pain
by Jclmal (Oct 22)

Thanks, take magnesium and potassium supplements. Try to remember to stretch. Even with CML busy life. Not quitting, like a little less pain and more energy. Appreciate the help

by Vijay Kumar Verma (Oct 22)

One more thing check ur posture , flat feet etc.mineral deficiency like mag, potasium, calcium.

David, Scuba will guide you much better.

Just a little bit of things from my side.hope you

by Vijay Kumar Verma (Oct 22)

Hi,

It may be due to tight hamstring .Do some strech and yoga.i'm sure ur knee feel happy after 2 or 3 session.if it help plz update.

by Jclmal (Oct 22)

Thanks for reply, I walk a lot at work. It seemed strange that just last few months when I rise up from sitting great pain in the knees. If I drive more than 20 minutes hurts. I played basketball a
Category: Treating CML

Replies: 6

Last updated: 22 October 2019
johnw1001 on 21 October 2019

Category: Side effects

Replies: 2

Last updated: 22 October 2019

Stopping /discontinuation-side effects
by Vikram (Oct 22)

Alastair c
Last pcr.......
TFR.... One year complete????
Any problem..... In TFR (last one year)???
Imatinib side effects discreases....... In TFR........
Your experience....... Please share last

by AlastairC (Oct 21)

Hi John,
After over 11 years on 400mg imatinib, I followed the Destiny protocol (I think your Lancet paper was probably on this) and cut to 200mg two years ago. 12 months ago tomorrow I took my last

by johnw1001 (Oct 21)

Hi All,
After being on Glivec/imatinib for nearly 14 years we are going to stop for up to 3 months in a few days as in early November we are scheduled for the implantation of iodine-125 seeds into
Category: Side effects

Replies: 2

Last updated: 22 October 2019
labros on 9 October 2019

Category: About CML

Replies: 6

Last updated: 21 October 2019

3-months results reveal that I achieved MMR in the peripheral blood but not CCyR in the bone marrow
by labros (Oct 21)

Hello Vicky,
Nothing more apart the conversation I had with the lab. The doctor just said that we should do the test again in 3 moths to verify that CCyR in the bone marrow has achieved.
L.

by VickyK. (Oct 21)

Hi Labros,

Any new info from your doctor?

Best

Vicky

by ColoradoGuy (Oct 11)

I had a strange result about a year ago too but probably the opposite from this example. My BMB showed 0.11 while blood pcr was around 0.3.....Dont fully understand it but don't really want another

by labros (Oct 11)

Thank you both for your answers. I've called the lab that did the analysis of the bone marrow, since I was curious as well. They've informed me that more than 20 molecules have been tested (
Category: About CML

Replies: 6

Last updated: 21 October 2019
Ontasigna on 20 October 2019

Category: Treating CML

Replies: 1

Last updated: 21 October 2019

Nilotinib - feeling very exhausted
by David Fitz (Oct 21)

Hi there,
I'm sorry to hear you're not feeling so good. Fatigue can be difficult to manage.
Firstly, this isn't a sign of your CML making a comeback or anything - so I hope you

by Ontasigna (Oct 20)

Hi there,
It's been 9 months since I am on Tasigna 400 mg BD and am on MMR(25-sep).
Since couple of days I am feeling very low and exhausted. Very lathergic n fatigue.
I almost have the same
Category: Treating CML

Replies: 1

Last updated: 21 October 2019
RC Kirk on 16 October 2019

Category: Treating CML

Replies: 6

Last updated: 20 October 2019

Precision dosing using concentration-controlled dosing of TKIs for CML could maximize the clinical benefit and minimize toxicity
by AlastairC (Oct 20)

Hi
This is the link to Prof Flanagan's team's paper on Pubmed.

by mamodei (Oct 19)

Interesting. I had quite a few side effects on the nilotinib, was switched to dasatinib after 2 months, and after 2 months on that my dose was lowered to 50 mg due to side effects. I

by RC Kirk (Oct 19)

Thanks Alastair, I had the plasma level checked once when I was taking 200mg/day. I guess my result was pretty much in line with the dose. Here's the result from that test:

by AlastairC (Oct 18)

I asked a question about therapeutic drug monitoring at last year's patient day, in I think the last Q&A session. Through my work some years earlier in toxicology I was aware of work
Category: Treating CML

Replies: 6

Last updated: 20 October 2019
mamodei on 9 September 2019

Category: Side effects

Replies: 12

Last updated: 18 October 2019

Neurological side effects with nilotinib or dasatinib
by kat73 (Oct 18)

Terrific! That's a wonderful result. I use to bargain with the gods in the early days: Either let me feel better or give me a good number so I can carry on through feeling bad

by mamodei (Oct 18)

It took a week for my lightheadedness to dissipate. I can drive to work again! I'm still having some other problems but hoping they will continue to minimize based on the experience

by mamodei (Oct 7)

My dose has been reduced to 50. Hoping this will turn things around for me.

by mamodei (Oct 2)

I have Lymes disease, which certainly muddies the water about what symptoms are what. This is not my first time with Lymes and usually the doxycycline gets the symptoms under control in just a
Category: Side effects

Replies: 12

Last updated: 18 October 2019
SwanValleySue on 27 January 2009

Category: Uncategorised

Replies: 5

Last updated: 18 October 2019

Depression condition - Medication could be the cause ?
by kat73 (Oct 18)

I spent two years trying to tease out that question, Alex! Certainly, the existential issues a cancer diagnosis brings forward can result in despair. But, two things to note (that were

by alexmcpee (Oct 18)

Although the medication could cause depression I am rather inclined to believe people have become depressed because of the diagnosis. I don't care who you are or how well you've responded we

by leslie chambers (Feb 9)

Hi Sue, I never had any problems while I was on Imatnib, but prior to that I was on Interferon for quite a time, but this led to severe depression, which without doubt was the worst period of my

by julie hubbard (Feb 2)

i have posted before on this subject, my 11 year old takes 500mg imatinib daily and does have periods of depression, he does not want to wake up in the morning, he is fed up with life etc and it is
Category: Uncategorised

Replies: 5

Last updated: 18 October 2019
jmonzione on 14 October 2019

Category: Children & young people

Replies: 11

Last updated: 18 October 2019

Small rise in PCR ABL test
by David Fitz (Oct 18)

Anything is possible, but you really first need to get either your latest result on the IS, or the IS conversion factor.
David.

by jmonzione (Oct 18)

So it’s plausible that my doctor did not notice a number missing from my report and I’m worried for nothing? I really don’t want to switch from sprycel over a misunderstanding -

by David Fitz (Oct 18)

That's pretty weird - to get an IS figure, you just need to apply the labs conversion factor. Simple arithmetic. Someone should be able to give you the labs conversion factor.
However, if

by jmonzione (Oct 18)

You guys are going to love this - I have international scale numbers for the tests I did on 4/29 (0.056) and 7/22 (0.046). When I spoke to the nurse they said they DID NOT have the international
Category: Children & young people

Replies: 11

Last updated: 18 October 2019
SamandRich on 16 October 2019

Category: Treating CML

Replies: 3

Last updated: 18 October 2019

Myelostat
by David Fitz (Oct 18)

Sam,
Bosutinib often works for patients who have had issues with other TKIs. The evidence seems to suggest it is somewhat more gentle in terms of side effect profile. Omacetaxine just isn't

by SamandRich (Oct 18)

Hi David

Sorry for the late reply, also nilotab, both not able to tolerate and started getting signs of toxicity.

Thanks for reply

Sam

by David Fitz (Oct 16)

Hi there,
I don’t have any experience with this medication, but others may know it better by it’s other names - Omacetaxine or Synribo, but if I’m reading things right this is an

by SamandRich (Oct 16)

Hi guys, hope you are all doing well. I've just had my medication changed to myelostat and read that it has severe nausea and hair loss as some of the side effects , has anyone else experienced side
Category: Treating CML

Replies: 3

Last updated: 18 October 2019