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Susanne2311 on 13 July 2021

Category: Uncategorised

Replies: 5

Last updated: 16 July 2021

Cml patient’s immunity
by Susanne2311 (Jul 16)

You are absolutely right EvaH. This disease definitely does not define him. It’s just that he informed about his condition to us just 2 weeks back and it was too much to digest for me and my

by EvaH (Jul 16)

53% at diagnosis would indicate he was diagnosed very early in the disease progression, normally is 100%>
53% to 8% in 3 month is indicative of log reduction. Ie Ideal path to MMR

by EvaH (Jul 16)

His immunity should be fairly normal.

At his stage, i was planning a trip backpacking in Sri Lanka and my doc ran an immune planel to ensure everything was fine and it was.
Are you worried or

by Susanne2311 (Jul 13)

My brother who is a CML patient has a bcr abl gene of 8% that has come down from 53% 3 months back when he was first diagnosed. His WBC count is normal and his spleen size is normal too. Which stage
Category: Uncategorised

Replies: 5

Last updated: 16 July 2021
Roza on 6 July 2021

Category: Blood tests

Replies: 6

Last updated: 16 July 2021

12 month BCR reading not as expected
by EvaH (Jul 16)

Ps there was no mutation, im still on 400mg imatanib, with time side effects diminished. Do a search on this forum for tips on managing them. Best of luck!

by EvaH (Jul 16)

I was checked for a mutation due to sub optimal results at 3 months. It seems to be a standard medical protocol when there's a blip in bcr/abl progession.
I agree the extra tests are from caution,

by Roza (Jul 8)

Many thanks, I think there is so much focus on the 12 month point from the time of diagnosis, it just makes it a bit more nerve-wracking than it probably should be. Really appreciate the support.

by ColoradoGuy (Jul 8)

I would wait to see if you have a trend before any switch. It may just be a plateau with a drop coming up. Alistair is right that 0.3% at 12 months is pretty good. I have seen my
Category: Blood tests

Replies: 6

Last updated: 16 July 2021
EvaH on 7 June 2021

Category: Uncategorised

Replies: 39

Last updated: 15 July 2021

Question for dose reduction/ TFR folk
by EvaH (Jul 15)

Thanks buzz, interesting and i didn't know it.

by Buzzm1 (Jul 14)

EvaH, Imatinib is known for moderating blood pressure. As I reduced my Gleevec dosage my blood pressure meds were eventually increased. Glad to hear that you have begun Imatinib dosage

by EvaH (Jul 14)

I started with alternating 200mg and 400mg last week.
Had my first eye bleed in ages today, is that a known dose reduction side effect?
It cleared up very quickly , which is a good sign, but i do

by Buzzm1 (Jun 20)

EvaH, alternating 400mg and half-tablet 200mg averages 300mg; many have done this without any problem.
Category: Uncategorised

Replies: 39

Last updated: 15 July 2021
KirstForsts on 12 July 2021

Category: Blood tests

Replies: 4

Last updated: 14 July 2021

Steroids to support bone marrow
by KirstForsts (Jul 14)

Thank you! I’m looking forward to these times passing!
Thank you again for taking the time to reply!
k 😊

by TimoD (Jul 14)

Hi!
In my case the growth factor injection is for increasing neutrophil count. I do not have much trouble with anemia, my concern is neutrophils
EPO aka erythropoetin is an active biological

by KirstForsts (Jul 13)

Hi! Thanks so much for taking time to send such a detailed reply. It’s really helpful!
It is likely my husband will restart TKI therapy next week given the amount of time he has now been off

by TimoD (Jul 13)

Hi!
My situation mirrors your husbands one exactly. I am also 7 months in and struggling with low platelets and low neutrophils. My anemia is mild though and hovering between 10 and 12.
Category: Blood tests

Replies: 4

Last updated: 14 July 2021
David on 6 July 2021

Category: Uncategorised

Replies: 13

Last updated: 13 July 2021

Coronavirus vaccine effectiveness in CML patients
by Ismo (Jul 13)

Hi Christine et al
I too had an antibody test with my latest bloods and was advised that I had produced antibodies but it was not clear a) what level was required to achieve maximum protection and b

by Christine R (Jul 10)

After reading this thread i started to worry that i may not have the full picture in respect of my immune response. I emailed my consultant who has advised that i had anti bodies and had some

by Christine R (Jul 8)

I also asked my consultant about the vaccine and i was told i could have an antibody test with my next set of bloods. The result showed there were anti bodies but there was a note with the results

by michelle (Jul 7)

Hi Alistair
Your reply has given me some needed reassurance. I will be continuing to observe the same measures as you.. I had just begun to feel a little better after the whole shielding
Category: Uncategorised

Replies: 13

Last updated: 13 July 2021
Dustylloyd on 13 July 2021

Category: Uncategorised

Replies: 0

Last updated: 13 July 2021

Lifting of restrictions.
by Dustylloyd (Jul 13)

Hi all,
just wondering about concerns after announcement confirming the lifting of the majority of restrictions concerning covid (uk) coming into force on the 19th July, I’ve raised the point
Category: Uncategorised

Replies: 0

Last updated: 13 July 2021
patriciakh on 11 July 2021

Category: Side effects

Replies: 5

Last updated: 13 July 2021

Skin reactions and Imatinib
by Felix (Jul 13)

Hi, o good you can get to Superdrug.I bought the Vitamin E intensive all over body cream it's in a big pot and the hydrating mist ,kept one of these in the fridge .Great to cool the rash down

by patriciakh (Jul 12)

Sandy, thank you for this. My consultant is not a specialist in CML and is very overworked at present. With telephone consultations it is obviously not as good as seeing the patient and

by patriciakh (Jul 12)

That is really helpful Denise, thank you. I shall buy some of the cream and spray from Superdrug. The itching has been awful, hopefully this should help. All the best. Paricia

by Felix (Jul 12)

Hi Patricia ,I too had a really bad very itch red bumpy rash on neck ,chest area and over my shoulders ,it used to drive me mad and was worse in hot weather .I didn't want to go the steroid
Category: Side effects

Replies: 5

Last updated: 13 July 2021
jb on 9 July 2021

Category: Blood tests

Replies: 4

Last updated: 10 July 2021

Anemia and lower leg fluid
by jb (Jul 10)

Thanks all!! That makes me feel better! Stay well everyone.
jb

by Krissi0913 (Jul 10)

Hi. I've been taking Sprycel for 31 days now and I have weekly blood tests. My hemoglobin and platelets were low last week, and are now back in the normal range. My WBC have been normal

by sandy craine (Jul 10)

Fluid retention in lower legs? This might be because you are not taking enough exercise, even while you are sitting you could try to keep your feet and legs in motion. Blood/fluid tends to pool at

by ColoradoGuy (Jul 9)

I did have fluid retention in lower legs prior to diagnosis. In fact, that is what made me go to the emergency room to figure out why that was happening. I have not read of any other
Category: Blood tests

Replies: 4

Last updated: 10 July 2021
scuba on 8 July 2021

Category: Uncategorised

Replies: 2

Last updated: 10 July 2021

Dasatinib and old age ...
by Krissi0913 (Jul 10)

Super interesting. Thanks for posting.

by Nimbus2 (Jul 9)

Post removed.

by scuba (Jul 8)

For those taking dasatinib (sprycel), the article below is interesting ...
Combining dasatinib with quercetin helps mice eliminate senescent cells (old age cells).

https://today.uconn.edu/2021/07/
Category: Uncategorised

Replies: 2

Last updated: 10 July 2021
EvaH on 4 July 2021

Category: Other conditions

Replies: 7

Last updated: 9 July 2021

Blood donation - not possible ?
by Nimbus2 (Jul 9)

Yes, it is health and safety. At 85 kg, I would be excluded. However, patients often lose weight prior to death. The University of Birmingham did not even respond to my letter. It is also necessary

by hannibellemo (Jul 8)

I was told cornea donation was acceptable. No?

by AlastairC (Jul 8)

David I guess this is a health & safety consideration for the medical students moving the body about. From some of the descriptions of friends who were medical students in the 1970s this

by David Fitz (Jul 8)

Wow! I had no idea there was a weight limit, I would have thought all shapes and sizes would be medically interesting, one way or another.
80kg is not a lot … I barely scrape into that and I
Category: Other conditions

Replies: 7

Last updated: 9 July 2021
SS86 on 6 July 2021

Category: Side effects

Replies: 2

Last updated: 9 July 2021

6 months with Dasatinib - Some queries & concerns
by SS86 (Jul 9)

Thank you :)

by An (Jul 8)

Hi ,
Even my husband's skin tone had become pale after dasatinib,it seems to be a common side effect

For fatigue drink lots of water, weirdly exercise helps,I don't know if it is due to

by SS86 (Jul 6)

Hi All,
My wife has recently completed 6 months on Dasatinib 100 mg after being diagnosed in December 2020. Would seek your valuable advise/inputs on the below concerns:
- greying of hair
Category: Side effects

Replies: 2

Last updated: 9 July 2021
sandy craine on 9 July 2021

Category: Treating CML

Replies: 0

Last updated: 4 August 2021

iCMLf conversations - Managing Pregnancy during CML treatment
by sandy craine (Jul 9)

If you missed the iCMLf EHA highlights webinar last week, the recording can be found here: iCMLf Conversation EHA Highlights
iCMLf Conversation - CML & Pregnancy -
Join our two experts as
Category: Treating CML

Replies: 0

Last updated: 4 August 2021
Susanne2311 on 6 July 2021

Category: Treating CML

Replies: 4

Last updated: 7 July 2021

Pfizer vaccine
by Susanne2311 (Jul 7)

So glad to hear this!!!! Thank you so much!!! God bless.

by Roza (Jul 6)

Hi, I had both jabs of the Pfizer, 1st in Jan and then Mar. No problems at all. Good luck to your brother and tell him not to worry.

by Susanne2311 (Jul 6)

Thank you so much for replying!! You just gave a huge relief to me and my family who are struggling to cope with this situation. God bless!!

by An (Jul 6)

My husband has cml ,diagnosed in 2019,currently on 100 mg dasatinib,he took both doses of pfizer ,nothing else other than some tiredness and sore arm for two days,drink lots of water.
Category: Treating CML

Replies: 4

Last updated: 7 July 2021
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