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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
Sd on 6 June 2021

Category: Side effects

Replies: 5

Last updated: 12 June 2021

Decreasing Imatinib
by Sd (Jun 12)

I have been on 200mg. of imatinib now for 2 weeks. I have less nausea, fatigue and anxiety and I am sleeping much better. The brain fog is gone. So I am guessing this was a transcient response

by Sd (Jun 6)

I have been on since Sept 2019 with excellent results (achieved MMR in December.)

by Faith_05 (Jun 6)

Hi Sd,

How long are you on imatinib??

Faith

by Sd (Jun 6)

Since I am doing so well, the half dose will hopefully cut down on other side effects. If I do well, it might be a prelude to TFR (although not for another year yet).
Category: Side effects

Replies: 5

Last updated: 12 June 2021
Polineczka on 12 June 2021

Category: Side effects

Replies: 2

Last updated: 12 June 2021

Temperature
by Polineczka (Jun 12)

Thank you for your response. the temperature varies between 37-37.2 and I thought it was feverish. Maybe it's stress. By the way, I would like to thank you that you are, I read you and I feel

by sandy craine (Jun 12)

Hi Ola, 'normal' body temperature is approximately 37C. A fever is usually when your body temperature is 37.8C or higher.
Sandy

by Polineczka (Jun 12)

Hello, I'm Ola, since the beginning of the treatment (1.5 years) I have an elevated body temperature around 37. My doctor thinks it's not leukemia. Do any of you have the same? 1 year
Category: Side effects

Replies: 2

Last updated: 12 June 2021
ColoradoGuy on 7 June 2021

Category: Uncategorised

Replies: 8

Last updated: 12 June 2021

Vertigo Loss Of Balance Anyone
by sandy craine (Jun 12)

Yes, definitely try to stay well hydrated and keep electrocytes in balance - sodium/potassium etc. particularly in warm weather. low blood sugar can cause nausea and dizziness so make sure you eat

by ColoradoGuy (Jun 10)

Thank you all for the replies. I always appreciate it. Stay hydrated and onwards to deeper remission.

by hannibellemo (Jun 10)

I also experienced bouts of vertigo on dasatinib, mine occurred after I had been on it for several months, also bouts of nausea that came out of the blue. They eventually disappeared as mysteriously

by Nimbus2 (Jun 9)

A week after I discontinued imatinib and started dasatinib, I suffered an episode of feeling extremely ill with vertigo and vomiting. My consultant asked me not to come into the hospital but
Category: Uncategorised

Replies: 8

Last updated: 12 June 2021
scuba on 15 July 2018

Category: Uncategorised

Replies: 20

Last updated: 11 June 2021

Vitamin D
by David787 (Jun 11)

That’s very interesting, thanks Scuba. I shall certainly up the dose and look into the K2 supplement also.
Ah the Bahamas, you lucky fellow! Last time I was there I did a most

by scuba (Jun 11)

In your case, if it were me, I would take 5,000 IU's per day for a month in order to get my level up to the 70's.
Taking vitamin K2 (200 mcg) daily will insure vitamin D is used properly by

by David787 (Jun 11)

Hello Scuba
Many thanks for the reply. Ah, that’s very interesting. I have been taking 2400 IU per day for about 4 months after having a very low vitamin D level when I asked for it to be

by David787 (Jun 11)

Hello Scuba
Many thanks for the reply. Ah, that’s very interesting. I have been taking 2400 IU per day for about 4 months after having a very low vitamin D level when I asked for it to be
Category: Uncategorised

Replies: 20

Last updated: 11 June 2021
Ontasigna on 6 June 2021

Category: Treating CML

Replies: 1

Last updated: 10 June 2021

URGENT : Lymphocytes Increased
by ColoradoGuy (Jun 10)

What were your lymphocytes previously? I don't think that this is the cause of your pain. My CBC always gives a range to fall within but for Lymphocyte percent it does not.

by Ontasigna (Jun 6)

Hi All.,
Due to severe muscle and joint pain. I got my blood tested today.
There is an increase in Lymphocytes count.
TLC : 7740
Neutrophils : 40%
Lymphocytes - 48%
Monocytes: 6.6%
Eosnophils : 4.3
Category: Treating CML

Replies: 1

Last updated: 10 June 2021
mil on 8 June 2021

Category: Blood tests

Replies: 4

Last updated: 9 June 2021

Test result bcr-abl
by mil (Jun 9)

Thank you guys for your comments

by Buzzm1 (Jun 8)

mil, it isn't at all unusual for a CML patient to have their BCR-ABL plateau at a low level. With your next (18 month) test, you will have been plateaued at a very low CML level (under 1.0

by mil (Jun 8)

Thank u Al!, i just corrected my resulta in the post.

by alexmcpee (Jun 8)

Hi your close to MMR4 your response is great no need for any change. Not everyone gets to undetected but anything under MR4 is indistinguishable to Undetected.
Absolutey zero reason to change unless
Category: Blood tests

Replies: 4

Last updated: 9 June 2021
Zedlife24 on 7 June 2021

Category: About CML

Replies: 12

Last updated: 9 June 2021

CML Stories
by EvaH (Jun 9)

Zed: thanks for sharing further details. I apologize for my wholly incorrect assumptions on your situation. in my experience/circles being so settled at 27 is unusual , i hadn't considered it.
How

by alexmcpee (Jun 8)

Hi there,
And welcome to this wonderful group. Diagnosis is a complete shock we all get that. Like you relatively young 37 at Diagnosis, I would have considered myself fairly healthy in general.

by Janet Treble (Jun 8)

Just like you I am a newly diagnosed CML patient, it got picked up in November 2020 whilst I was in hospital with Covid 19. Prior to diagnosis I had been experiencing a lot of pain in my hips when I

by Zedlife24 (Jun 8)

Thanks for the info Colorado! I hadn’t heard about K2, very glad to hear it gets easier
Category: About CML

Replies: 12

Last updated: 9 June 2021
vonnie on 6 June 2021

Category: Uncategorised

Replies: 4

Last updated: 7 June 2021

cramps
by Nimbus2 (Jun 7)

I had painful daily cramps on imatinib.
The very day I stopped using imatinib and started using dasatinib, the cramps went away never to return.
The curious thing is that I did get occasional cramps

by vonnie (Jun 7)

Hi i would like to say thanks to all who replied to my post its just nice to know i am not the only one
thanks Vonnie

by EvaH (Jun 7)

I used to get all sorts of weird cramps (fingers, toes, back, boob!!) , Two things help:

200mg magnesium daily

Light weight training of all muscle groups
Go easy with the weights at.

by pianogrl44 (Jun 6)

I’ve been on imatinib for 6 years and I do find leg cramps and even hand cramps quite common but they are much worse on days when I haven’t had enough water. I find I need to drink
Category: Uncategorised

Replies: 4

Last updated: 7 June 2021
Karinne on 21 December 2019

Category: Uncategorised

Replies: 7

Last updated: 7 June 2021

Curcumin
by scuba (Jun 7)

MMR on only 200 mg imatinib is excellent.
Curcumin is poorly absorbed by the body even with piperine (pepper). It takes a lot of Curcumin to be effective. But it does work if the dose is high enough

by Sd (Jun 6)

Hi Scuba,
I want to get started with Curcumin. I take imatinib 200mg a day. Have had CML for 20 months and have achieved MMR. My arthritis is increasingly bad, especially in my legs and feet. I will

by Karinne (Dec 29)

I never heard of it!. Thanks.

by Karinne (Dec 29)

Thanks Scuba. Very interesting.
Category: Uncategorised

Replies: 7

Last updated: 7 June 2021
Jmbnccyn on 26 May 2021

Category: Organising your life

Replies: 13

Last updated: 4 June 2021

How does the cml condition or limit you?
by EvaH (Jun 4)

Best of luck!

I'm sure you can have the life you want.
I was suboptimal at 3 months but was very quick to hit MMR (or so i was told)

by Jmbnccyn (Jun 3)

Hello, I am physically fine except for some side effects of the medication, however despite feeling fine, my CRP response for months 3 and 6 was suboptimal which does not help me feel calmer but

by EvaH (Jun 3)

Btw after getting better from CML, i developed a very serious retinal issue as a result of the CML. I spent one year being treated and without knowing how bad it might get - worse case scenario i

by EvaH (Jun 3)

Very sorry to hear you are going through this!
Sounds like you need support to get the life you want back. From what i read your struggles are primarily mental at this point. I'm assuming your
Category: Organising your life

Replies: 13

Last updated: 4 June 2021
Tater1 on 1 June 2021

Category: Uncategorised

Replies: 9

Last updated: 4 June 2021

Confused about next steps.. dose increase Sprycel
by onekayaker (Jun 4)

Hey CG.... May I ask what side effects have you experienced taking nilotinib?

by Tater1 (Jun 3)

Hi kat73,
I love Dr. Mauro and his team and am so grateful to him for many reasons. He is collaborative and supportive while also being honest and transparent. There was no pressure

by Tater1 (Jun 3)

Hi Heidi,
Thanks for this! You nailed it exactly. It’s hard to be a slow responder because of that initial anxiety lingering. It’s just hard, period, and I’m

by kat73 (Jun 3)

Wow, Tater, you are so lucky to be going to one of the world's leading lights in CML research - for God's sake, trust anything he says! You are in such an early phase of this fight -
Category: Uncategorised

Replies: 9

Last updated: 4 June 2021
TimoD on 31 May 2021

Category: Uncategorised

Replies: 2

Last updated: 1 June 2021

Secondary chromosomal change in a Ph+ cell
by TimoD (Jun 1)

Thank you!
I've read that study as well. Well, we will see if it has any negative effect on treatment. It's just that it is an unknown variable in my treatment process and makes me wonder

by ColoradoGuy (Jun 1)

Timo - I can't find the study now (I tried) but I read one that said t(x,22) was not a high risk. From everything I read 3, and 17 were a couple that should signal a change in approach. Also keep

by TimoD (May 31)

Hello everybody

Just wanted to ask if anyone had any experience with secondary chromosomal changes (i.e. additional chromosomal aberrations) in Ph+ cell.
During my 3 month bone marrow
Category: Uncategorised

Replies: 2

Last updated: 1 June 2021
FirefighterCML on 27 May 2021

Category: About CML

Replies: 6

Last updated: 30 May 2021

1st PCR test results on Sprycel after 14 weeks
by alexmcpee (May 30)

It’s resistance but you don’t want allow CML any chance to do what it wants. Adherence is really important but I do understand why sometimes it can’t be avoided. Also a lot of TKIs

by FirefighterCML (May 29)

Good to hear! I am going to talk to my oncologist at 6 months after my next PCR about it. I feel the TKI causes damage elsewhere in my body, particularly in my abdominal area. I

by FirefighterCML (May 29)

I didn’t know missing doses could cause mutations You have motivated me to do better.

by scuba (May 29)

Given your response, you should certainly consider lowering your dose. You might even consider 20 mg.
Category: About CML

Replies: 6

Last updated: 30 May 2021