You are here

Forum

JPD on 28 June 2021

Category: Uncategorised

Replies: 9

Last updated: 7 July 2021

Tasigna regimen & efficacy
by hannibellemo (Jul 7)

I'm not as strict with the eating rule because I am only taking 150mg twice a day. I eat by 8 am, dose at 10, eat before 7 pm and dose anywhere from 9 - 10 pm. The food concern applies more to

by Buzzm1 (Jul 6)

Naj, hoping you get this message; four and a half years is a long time to be on the full dose of any TKI. While it's true that younger CML patients tend to tolerate the full dose of TKIs

by TimoD (Jul 6)

Hi!
Personally I am very strict. I drink only water and according to patient information leaflet, a few spoons of apple jam is OK as well (no joke)
In reality, suggestion is to avoid anything

by TimoD (Jul 6)

Hi!
Personally I am very strict. I drink only water and according to patient information leaflet, a few spoons of apple jam is OK as well (no joke)
In reality, suggestion is to avoid anything
Category: Uncategorised

Replies: 9

Last updated: 7 July 2021
cmhall604 on 28 December 2020

Category: About CML

Replies: 12

Last updated: 6 July 2021

New to the group / questions about relapse
by AlastairC (Jul 6)

Susanne, folks on here will be able to help a little more if we could know which of the TKI drugs your brother is taking?

by AlastairC (Jul 6)

Susanne, I hope I can help with some of this - I'm 14 years in, and I'm an imatinib user.
Over these years, for any minor illnesses you had, were you given treatment in the same away as any

by Susanne2311 (Jul 6)

Hey Sandy,
I have read your replies on a lot of threads and it makes me very optimistic. My brother got diagnosed with CML 3 months back and we are all quite taken aback. I have a few queries to ask

by Susanne2311 (Jul 6)

Hey Sandy,
I have read your replies on a lot of threads and it makes me very optimistic. My brother got diagnosed with CML 3 months back and we are all quite taken aback. I have a few queries to ask
Category: About CML

Replies: 12

Last updated: 6 July 2021
cmhall604 on 29 June 2021

Category: Blood tests

Replies: 2

Last updated: 30 June 2021

Low drug concentration (nilotinib)
by sandy craine (Jun 30)

Hi Chris,
"...For her most recent tests, the doctor also ordered a drug concentration test. The result was 406 ng/ml, which from what I understand is quite low. I should note that the blood was

by alexmcpee (Jun 29)

Hi Chris
Id say firstly your wife is practically MMR4 (only out by a smidge) still. Some of us have taken decades to get to that level so that’s the 1st positive.
Secondly anything below MMR4

by cmhall604 (Jun 29)

Hello again,
testing time has just passed so I'm back for more info. My wife has recently had some less than ideal results. Here are PCR rest results for background:
9 months after dx: PCRU
Category: Blood tests

Replies: 2

Last updated: 30 June 2021
Balajee on 21 June 2021

Category: Side effects

Replies: 7

Last updated: 30 June 2021

Tasigna Side effects
by EvaH (Jun 30)

Understand that cml is a very, very, very rare disease.
What did you expect to find on the internet about a disease that affects something like 0.002% of population.
If you really want to read up,

by Balajee (Jun 29)

I was worried because I have gone through internet for searching to find a case which says about sperm count when on Tasigna. I have not found a case discussion or a paper on this side effect.

by Balajee (Jun 29)

Thanks for the encouragement. Yes I have seen many alterations to the body done by medications and is not going to end yet. Hopefully, everything will be fine.

by alexmcpee (Jun 26)

My Libido was defo effected for sometime on TKI however over the last couple of years it’s normal if not better 😳… I think 80% of it is our mental state for sure and let’s face it
Category: Side effects

Replies: 7

Last updated: 30 June 2021
sandy craine on 29 June 2021

Category: Other conditions

Replies: 0

Last updated: 29 June 2021

Hydrogen Peroxide Nebulization?
by sandy craine (Jun 29)

This may be of interest to some who are interested in/or use complimentary therapies to manage their general health.
Rapid Virus Recovery - free e-book
http://orthomolecular.org/resources/omns/
Category: Other conditions

Replies: 0

Last updated: 29 June 2021
koralia.pappi on 21 June 2021

Category: Blood tests

Replies: 6

Last updated: 28 June 2021

Nilotinib and c-reactive protein (crp)
by koralia.pappi (Jun 28)

Hi!
Don't worry at all! It's been a nightmare for me as well, to calculate.
(CRP) mg/L = 10* (CRP) mg%
(CRP) mg% is also written as (CRP) mg/dl.
Anyhow :-)
Regards,
Koralia

by hannibellemo (Jun 28)

Koralia,
I had a C-reactive protein done in April of this year. According to Mayo-Rochester the threshold is <=8.0mg/L. My result was <=3.0mg/L. In looking back over your post I think your

by alexmcpee (Jun 28)

I can sympathise completely I am very sensitve to anything out of the "norm" myself. I think especially so when you are fairly new to your new normal and having a CML diagnosis.
The way I

by koralia.pappi (Jun 27)

Hi Alex, Thanks for the answer. You are completely right, of course. I'm overall greatful under the circumstances, for what TKIs offer, but sometimes small fears get the best of me. This disease
Category: Blood tests

Replies: 6

Last updated: 28 June 2021
Tedro on 13 April 2020

Category: Treating CML

Replies: 6

Last updated: 27 June 2021

Sprycel 100mg missed dose
by Tater1 (Jun 27)

I also use Easy Pill, based on one of your previous posts and love it. My husband also sets a regular alarm on his phone…. To remind me to take my meds. I also put one dose in an

by alexmcpee (Jun 27)

Hi
I also use an app called MyTherapy which reminds me twice a day to take my Nilotinib. Because Nilotinib has strict guidance and can’t be taken with food I have to stick to the schedule so

by Krissi0913 (Jun 27)

Obviously adherence to the schedule is what we should all be doing. Same time every day. Having said that, I am no expert, but your logic seems sound to me. I can't image that

by David Fitz (Apr 13)

I use an app called Easy Pill that reminds you to take your pills, and will keep harassing you until you tell it you’ve taken it.
Never missed a pill in over 7 years.
https://www.
Category: Treating CML

Replies: 6

Last updated: 27 June 2021
DawnD on 26 June 2021

Category: About CML

Replies: 2

Last updated: 27 June 2021

Question please
by DawnD (Jun 27)

Thanks Alex for response. Knock on wood I have been fortunate with my journey so far so I hate to complain about anything at all. Thank you for answering. Dawn

by alexmcpee (Jun 26)

Good that you ask the question. I seem to myself to have had several times the feeling of being stuck in “cold limbo” and what I mean by that is what you say you can feel a cold kinda

by DawnD (Jun 26)

I have a question for the scientific minds. I have determined when other people in my family become sick with colds, flu symptoms etc. I do not come down with common symptoms. I do come down with
Category: About CML

Replies: 2

Last updated: 27 June 2021
thomas.c on 26 June 2021

Category: Treating CML

Replies: 6

Last updated: 26 June 2021

TFR fail
by Buzzm1 (Jun 26)

Thomas, CML, untreated, can easily double week-to-week, so the three weeks in between the first test and receiving the result can easily account for the second test 0.08 result. Not to panic,

by thomas.c (Jun 26)

Thanks, John for sharing your story. It must have been difficult to go through all the complications. I hope your condition have stabilized ever since.
Well, i guess there is nothing else to do but

by thomas.c (Jun 26)

Thanks, John for sharing your story. It must have been difficult to go through all the complications. I hope your condition have stabilized ever since.
Well, i guess there is nothing else to do but

by johnw1001 (Jun 26)

Hi Thomas,
It seems that from the data and from previous studies that about 50 percent of us that attempt it will fail TFR; dose reduction prior to cessation seems to help a little though in terms
Category: Treating CML

Replies: 6

Last updated: 26 June 2021
jb on 23 June 2021

Category: Side effects

Replies: 3

Last updated: 26 June 2021

Follow-up blood test
by jb (Jun 26)

Thanks for the the responses. Just really new to this. Doctor has been helpful but I always have more questions than he has time to answer.
So, Thanks again
Jb

by alexmcpee (Jun 25)

Hi JB,
Some appear in the early days and others appear somewhere down the line. I think being 3 years in now myself I would have thought most would have reared their heads but I do defo have

by Tater1 (Jun 23)

Hi there
I was diagnosed 18 months ago… started on 100mg dasatinib, which knocked me on my butt for several weeks with terrible headaches, fatigue, dizziness etc. Those side

by jb (Jun 23)

Realized I replied to myself. whoops..

I have been on Dasatinib for 10 days and have had only mild side effects. The doctor said I could still have side effects manifest for
Category: Side effects

Replies: 3

Last updated: 26 June 2021
Tater1 on 23 June 2021

Category: Blood tests

Replies: 2

Last updated: 25 June 2021

Results from AdviseDx SARS-CoV-2 IgG II reagent assaY
by Krissi0913 (Jun 25)

That is great news - thanks for sharing!

by Sally Martin (Jun 24)

Hi, that’s really great news -thanks so much for sharing. I haven’t had a test but am living life to the full again and hoping for the best on the antibody front, having had my second

by Tater1 (Jun 23)

Hi everyone,
I just thought I would share that my antibody test results came back positive today. I know I have to be cautious interpreting the results to mean any kind of immunity to COVID 19, but
Category: Blood tests

Replies: 2

Last updated: 25 June 2021
Lavinia on 20 June 2021

Category: Side effects

Replies: 4

Last updated: 23 June 2021

Eye pain and Sprycel / Dasatinib
by DawnD (Jun 23)

I too have eye pain. It feels sometimes like nerve pain. Didn’t even think it could be related to the TKI. Interesting.

by johnw1001 (Jun 21)

In the medical literature there is quite a bit written on occular toxicity and tki s and in United States the FDA has published some label notes re eye side effects for each of the tkis

by Aeje10327 (Jun 20)

I have an ache in my left eye that comes and goes. I am also on sprycel. When it happens I just try to drink more water. It tends to get better.

by alexmcpee (Jun 20)

It’s difficult to describe but yes I get eye ache since being on Nilotinib. Sometimes as you say feels like the sockets or the eyeball. Only experienced since being on meds. I can feel the
Category: Side effects

Replies: 4

Last updated: 23 June 2021
jb on 22 June 2021

Category: Blood tests

Replies: 6

Last updated: 23 June 2021

Follow-up blood test
by AlastairC (Jun 23)

Hi. depending on where you're being seen BCR-ABL may not be a for a few months. Initial progress can be monitored by FISH (see under the testing for CML section under the "About CML"

by jb (Jun 23)

I am a 10 days on Dasatinib and feeling good overall with minimal side effects. I saw the doctor yesterday who told my side effects could still manifest for a month or more. Can I expect to

by JPD (Jun 23)

My WBC plummeted pretty quick - which is the idea. I remember some of my other numbers being a little fucked up but they normalized in a few weeks and the docs were never concerned.

by jb (Jun 22)

Thanks Al. I appreciate the input.
JB
Category: Blood tests

Replies: 6

Last updated: 23 June 2021
alexmcpee on 21 May 2021

Category: Uncategorised

Replies: 33

Last updated: 20 June 2021

Latest results in
by alexmcpee (Jun 20)

Wowzers great news mate. You’ve had almost a full log drop and almost MMR4! That seems to be the running theme a long plateau at times then a big drop. I don’t mind plateaus it’s

by Nimbus2 (Jun 20)

Well done, Alex. I am other tortoise. I have been oscillating between 0.1 and 1 for two years. Suddenly, there's an AVALANCHE, 0.0146%. I couldn't believe it at first and had to call in

by alexmcpee (Jun 4)

Cheers Chris!
Haha yeah I was a little worried it may never happen. As we've seen so many times just when we think things have stopped we get another drop. Any drop is good!
Al

by cdw5000 (Jun 2)

Hi,
Glad to hear it's trending down and below the magic MMR line. I know this was a concern for you.
A fellow tortoise
Chris
Category: Uncategorised

Replies: 33

Last updated: 20 June 2021
sandy craine on 11 June 2021

Category: Other conditions

Replies: 1

Last updated: 20 June 2021

Is it a Cold? Or is it COVID? - update on the Delta Variant symptoms presentation
by Nimbus2 (Jun 20)

Hello Sandy
I find some comfort in ordering the free lateral flow tests from the NHS. I am already on box four. I find that if I order them one evening, they are always delivered in the next morning

by sandy craine (Jun 11)

Is it a Cold? Or is it COVID?
Mild symptoms are allowing the Delta Variant to fly under the radar and run rampant among younger, partially vaccinated people according to the latest data from the ZOE
Category: Other conditions

Replies: 1

Last updated: 20 June 2021
Nimbus2 on 4 December 2020

Category: Uncategorised

Replies: 10

Last updated: 20 June 2021

Berberine
by Nimbus2 (Jun 20)

Thank you, Christine.
I was a little disappointed with the webinar. It was a panel only discussion with no real opportunity for patients to interact. Leukaemia UK is not so good at collecting

by Christine R (Jun 17)

Sounds like it was a good idea to ask it. I found it very interesting.
I asked the question about the long term side effects of TKIs. Interesting that they thought there weren't any for most

by Nimbus2 (Jun 17)

Indeed, I asked that question.

by Christine R (Jun 17)

Just saw a webinar where a specialist said research is on going into Berberine but it would appear the volume needed to have any benefit makes it an impractical option.
Category: Uncategorised

Replies: 10

Last updated: 20 June 2021
scuba on 16 June 2021

Category: Uncategorised

Replies: 9

Last updated: 20 June 2021

Vitamin D & Covid - update on mortality study
by sandy craine (Jun 20)

Hi Scuba,
Thanks for the links. I am aware that I am keeping my level in the higher ranges - according to the current consensus on what is the 'optimal' level - and I am also aware that some

by scuba (Jun 19)

Sandy,
The 'DINOMIT' model of cancer development discusses vitamin D role and importance in lessening cancer risk (all mortality cancer):

https://oralcancernews.org/wp/new-model-suggests-

by sandy craine (Jun 19)

Scuba,
Since I started supplementing with high dose D3 (with K2 included) to try and stop the chest infections I had suffered at least once a year (4 days in bed, coughing, coughing, coughing) I

by scuba (Jun 19)

I take 180 mcg K2 per day supplement 'and' I eat Natto (over 400 mcg per serving). The more K2, the better (dose dependent) up to about 800 mcg after which no additional benefit is observed
Category: Uncategorised

Replies: 9

Last updated: 20 June 2021
k.Tam on 13 June 2021

Category: Blood tests

Replies: 6

Last updated: 14 June 2021

CML life limitation
by EvaH (Jun 14)

Also indian generic veenat costs 200 usd per month. I found a little more nausea with it but manageable and well worth it if cost is an issue.
You dont have to change country, you can change

by EvaH (Jun 14)

Max Foundation helps with TKI costs in certain countries. Ask about it.

by k.Tam (Jun 14)

Moving to other country is a good idea but not a short term option for me. It is about how to deal with the Tki problem especially on the cost although the cost already drop so muc after tki

by mamodei (Jun 13)

If you are doing well on the TKI I don't see why you need to tell your employers or prospective employers. Many of us are continuing our careers.
Category: Blood tests

Replies: 6

Last updated: 14 June 2021
scuba on 2 April 2021

Category: Uncategorised

Replies: 32

Last updated: 13 June 2021

And so it begins - TFR
by Basil from RSA (Jun 13)

Wishing you the best for your TFR Trial. Being TFR is fantastic as life feels normalised again. The only potential negative you may face in the coming months is "withdrawal symptoms". The

by CM-elon (Jun 7)

Best of luck, Scuba...look forward to hearing your (successful) journey!

by scuba (May 28)

https://www.cancertherapyadvisor.com/home/cancer-topics/chronic-myeloid-...
"Dasatinib, a highly potent second-generation tyrosine kinase inhibitor, is currently approved for CML-CP at 100 mg

by Tater1 (May 28)

Good luck to you! I’m sure you’ll get there :) if anyone can... it’ll be you.
Category: Uncategorised

Replies: 32

Last updated: 13 June 2021
EvaH on 13 June 2021

Category: Uncategorised

Replies: 0

Last updated: 13 June 2021

Denk generic imatanib
by EvaH (Jun 13)

Anyone have experience with ima-denk generic?
I'm being offered it, seems like new on the market
Category: Uncategorised

Replies: 0

Last updated: 13 June 2021