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dadbags on 11 January 2021

Category: Treating CML

Replies: 4

Last updated: 15 January 2021

DIAGNOSED 7/3/2001 CML--DIAGNOSED NO CML TODAY AFTER 3YEARS NO GLEEVAC
by israel (Jan 15)

Congratulations on reaching a new belt and being off gleevec for this long.

by kat73 (Jan 13)

dadbags - Congratulations! Could I ask, did you reach PCRU at some point and (presumably then) stop taking Gleevec? And if so, did you remain undetectable for these past three years?

by CM-elon (Jan 12)

Congrats Steven! Great news...and keeping the flames of hope burning for all of us. Good luck with the tests!

by scuba (Jan 11)

Congratulations Steven!
Stay vigilant and healthy.
Category: Treating CML

Replies: 4

Last updated: 15 January 2021
Myra on 7 January 2021

Category: About CML

Replies: 4

Last updated: 14 January 2021

CML treatment success
by mil (Jan 14)

Thank you Sandy, I don’t have fever today, i am trying to eat more before my imatinib, i will continue taking it, hope and pray not to vomit it 🙏🏼

by sandy craine (Jan 14)

Mil,
You must be in considerable pain with Kidney stones.
If you have a urine infection you do need to deal with that. Personally I do not take antibiotics if I can help it and prefer to deal

by mil (Jan 14)

Hi Sandy, please, i need some advice, please. I have kidney stones, i’ve been dealing with the pain, took metamizole, today i got fever, i think i have urinary infection, i took ciprofloxacin

by sandy craine (Jan 9)

Hi Myra,
You should expect to see a return to 'normal' blood counts within the first 4 weeks after starting TKi therapy. It may be that Haemaglobin levels are slightly under normal rates as
Category: About CML

Replies: 4

Last updated: 14 January 2021
Myra on 7 January 2021

Category: About CML

Replies: 3

Last updated: 13 January 2021

CML treatment success
by MartinZA (Jan 13)

It's hard to say when they will move to monthly blood tests because they are monitoring him for low counts (making him more prone to infections). At the beginning it is all about managing toxicity

by Myra (Jan 13)

Thank you Martin for your response. His blood levels have improved a lot and are stable from last 3 weeks but still he needs to go for blood test every week. I think they are observing his

by MartinZA (Jan 13)

Hi Myra
From my own experience, I achieved the complete haematologic response in 6 weeks after being diagnosed. But this included a week of hydroxyurea therapy before getting started on dasatinib.

by Myra (Jan 7)

Hi there,

How much time it takes to have complete hematologic response? Does that mean all blood counts are totally in range like normal person or slightly lower than normal person. After this
Category: About CML

Replies: 3

Last updated: 13 January 2021
mil on 12 January 2021

Category: About CML

Replies: 2

Last updated: 13 January 2021

CML and Kidney stones
by mil (Jan 13)

Thank you so much for your advice Thomas!

by thomas.c (Jan 13)

Hi,
I had 2 stones so far since my treatment, i’m on dasatinib. I don’t think its related to the treatment, at least in my case i had stones before my diagnosis too.
It is indeed

by mil (Jan 12)

Hi guys, I’m dealing with two kidney stones, too much pain! some of you maybe have this same problem before, could you let me know what did you take for this terrible pain without affecting
Category: About CML

Replies: 2

Last updated: 13 January 2021
LiaM on 12 January 2021

Category: Uncategorised

Replies: 2

Last updated: 12 January 2021

New CML with question about Pancytopenia after treatment
by LiaM (Jan 12)

Thank you so much for your response. That is reassuring to hear! I had not known that could happen and you could still continue with treatment eventually. Hopefully my son will have the same

by scuba (Jan 12)

I reacted the same way when I first started treatment with imatinib and developed pancytopenia. I had to stop imatinib to enable my blood counts to recover. I was switched from imatinib to a

by LiaM (Jan 12)

Has anyone else struggled with low blood counts (red, white, and platelets) after starting treatment? My son was diagnosed with CML most likely chronic, possibly accelerated, mid December 2020. He
Category: Uncategorised

Replies: 2

Last updated: 12 January 2021
johnw1001 on 11 January 2021

Category: Other conditions

Replies: 1

Last updated: 11 January 2021

Elevated NLR is an independent prognostic biomarker for Covid-19 patients;implications for CML patients
by Richard42 (Jan 11)

No harm - indeed quite the reverse - in doing things which should keep your immunity healthy. I do my best I hope. However, I’m not convinced one should read too much into these papers

by johnw1001 (Jan 11)

Hi All,
I am prompted to post this topic following discussion and various debates on what might constitute a healthy immune system in order to protect ourselves in general and also specifically as
Category: Other conditions

Replies: 1

Last updated: 11 January 2021
Victoria Parker on 9 January 2021

Category: Drug-food interactions

Replies: 8

Last updated: 11 January 2021

Can’t tolerate the TKIs!
by Victoria Parker (Jan 11)

Thanks Richard. It’s so good to share experience- very reassuring. I have everything crossed for this drug though always get quite anxious just before I have to take one but trying to stay

by Richard42 (Jan 11)

I had both a relatively significant drop in neutrophils when I first started imatinib (which was very short lived though worried a doctor or two at the time) and a number of side effects: at first

by Victoria Parker (Jan 11)

I wish the doctor had been more honest Conrad. I’ve learnt more on this forum!! I obvs couldn’t take the Dasatinib as that was a severe adverse reaction but should have persevered with

by ColoradoGuy (Jan 11)

I second Sandy's opinion that this is very fast to be cycling through TKI's. They are initially intolerable for a lot of us because they are attacking the disease but most of the time
Category: Drug-food interactions

Replies: 8

Last updated: 11 January 2021
johnw1001 on 7 January 2021

Category: Organising your life

Replies: 3

Last updated: 11 January 2021

BBC 1 Programme-The truth about your immune system
by Richard42 (Jan 11)

I watched this having seen your post - it was good. I then went to look at my blood results to check my neutrophil/lymphocyte ratio and the first one I looked at was great - about 1.8:1.

by Sunny (Jan 10)

Thank you John, I missed that program, only saw your post today, and immediately checked iPlayer, and was able to watch it there.
I believe that the saying "we are what we eat" is

by Sally Martin (Jan 9)

Yes, I saw it and also thought it very interesting. Your summary is spot-on.

by johnw1001 (Jan 7)

Hi All,
This programme was shown on BBC1 on the evening of Wednesday 6 January-it is available on BBC i player but only in UK I believe.I suggest that it might be useful to look at the
Category: Organising your life

Replies: 3

Last updated: 11 January 2021
Gaynor C on 5 January 2021

Category: Side effects

Replies: 4

Last updated: 10 January 2021

New to CML
by alexmcpee (Jan 10)

Hi Gaynor
Yes those are all normal. For me I had quite a few in the beginning and the odd thing here and there 1-2 years after starting treatment. Side effects can occur at any point but by year 1

by Gaynor C (Jan 9)

Thanks for that guys, I guess I had better learn to live with it. Its true, compared to some chemo side effects this is minor.
Good to hear that you're 15 years on from diagnosis John, you'

by johnw1001 (Jan 8)

All of the tki s have side effects.What you describe in terms of swollen eyelids is very common with Imatinib and is described as odema or swelling of tissues-itchy eyelids and swelling of them is a

by RC Kirk (Jan 6)

Some side effects lessen over time and others increase. Imatinib might not be the best TKI for you. One of the other TKIs could be better. It's a matter of trial and error as
Category: Side effects

Replies: 4

Last updated: 10 January 2021
Shera73 on 8 January 2021

Category: Treating CML

Replies: 3

Last updated: 8 January 2021

CML Patient assitance programe in uk
by johnw1001 (Jan 8)

I think that you will find that in the UK only hospital consultants are able to issue a prescription for a tki such as imatinib and not your GP.In addition under the NHS you will not be issued

by Shera73 (Jan 8)

Thanks for your response, from where i need to approach for glivic imtinab tablets.

Thanks and a blessing friday

by David Fitz (Jan 8)

Hi there,
All NHS patients in the UK don’t have to pay for any TKIs in the UK.
Because of that there are not, to my knowledge, any patient assistance programs
David.

by Shera73 (Jan 8)

Hi greeting

I was diagonosed CML in March, 2007.since i am taking glivic imtinab 400mg daily. My blood counts are in normal range. I need patient assitance programme where i vould get free
Category: Treating CML

Replies: 3

Last updated: 8 January 2021
Myra on 5 January 2021

Category: Blood tests

Replies: 12

Last updated: 8 January 2021

New to CML
by alexmcpee (Jan 8)

You’re more than welcome. I am sure in the coming months things will look more positive for your son and those that love him.
Hang in there once he responds things change dramatically.
Alex

by LiaM (Jan 8)

That is good he was able to take his finals. Hopefully he will be able to return to a normal routine and school 2nd semester. My son was able to postpone his exams but will hopefully be able to take

by Myra (Jan 7)

Hi, I can totally relate to you on this. My son was diagnosed in mid November 2020 and only 19years old. He just turned adult to handle all this and gave his finals in December. I was lucky that we

by LiaM (Jan 7)

My son was just diagnosed as well (this December 2020) and only 22. It has really been a roller coaster. It is hard with him being an adult and yet so young to handle all of this when only moments
Category: Blood tests

Replies: 12

Last updated: 8 January 2021
Myra on 7 January 2021

Category: About CML

Replies: 3

Last updated: 7 January 2021

CML treatment success
by David Fitz (Jan 7)

John,
The scoring mechanisms need quite a lot of medical background to really understand their prognostic value. Understanding them is way beyond any knowledge I have. I was scored EUTOS (low),

by johnw1001 (Jan 7)

There are various indices both predictive and prognostic which have been used ;for instance the SOKAL index for CML uses age,spleen size ,platelet counts and % myeloblasts count that were present on

by AlastairC (Jan 7)

Hi
The simple answer is that this varies very widely.
There are different levels of response to medication as measured by BCR-ABL testing as detailed on this page of this site. For normal blood

by Myra (Jan 7)

Hi there,

How much time it takes to have complete hematologic response? Does that mean all blood counts are totally in range like normal person or slightly lower than normal person. After this
Category: About CML

Replies: 3

Last updated: 7 January 2021
KirstForsts on 30 December 2020

Category: Uncategorised

Replies: 9

Last updated: 7 January 2021

New to CML
by alexmcpee (Jan 7)

That’s great news.
Over the course of the 3 years I have been diagnosed with CML (and the 3 years I was likely undiagnosed I might add) I have learned only to worry if my consultant worries.

by KirstForsts (Jan 7)

Hi Al,
Thanks for replying! The consultant called us as promised and said it wasn’t something to worry about given his count is still low. But they have moved him back to bi-weekly blood tests

by alexmcpee (Jan 7)

Hi Kirst,
Sorry for the late reply I have just seen this.
Its good that RBC and platelets are in the normal range. I believe white cell can be a bit stubborn for instance I started Hydrea and my

by KirstForsts (Jan 5)

Hi Alex,
hope you don’t mind me contacting you again - we had this weeks blood test results back and his RBC and Platelets are both in normal range but his WBC has gone back up from 14.2 to 24
Category: Uncategorised

Replies: 9

Last updated: 7 January 2021
Myra on 7 January 2021

Category: About CML

Replies: 3

Last updated: 7 January 2021

CML treatment success
by scuba (Jan 7)

My red counts have never returned to normal which is why I will stop dasatinib and try TFR. I feel the anemia only when I try to run sprints and increase my physical exertion. My hemoglobin is in

by RC Kirk (Jan 7)

It's been a few years (2012), but my counts got back to normal within a couple of months. My red count has usually been just below normal or at the low end. It hasn't affected my

by alexmcpee (Jan 7)

Hi there,
A complete Hamatologic response took me about 3 weeks from the time of starting TKI. I was on Hydrea for 3 weeks before this as I had a very high white count. But for the majority its

by Myra (Jan 7)

Hi there,

How much time it takes to have complete hematologic response? Does that mean all blood counts are totally in range like normal person or slightly lower than normal person. After this
Category: About CML

Replies: 3

Last updated: 7 January 2021
FirefighterCML on 4 January 2021

Category: Uncategorised

Replies: 12

Last updated: 6 January 2021

New to CML / Intro and Questions
by RC Kirk (Jan 6)

Those results looks like a blood count differential. The FISH score for BCR-ABL1 will also be a percent result, but it's a stand alone result. If you can get a full copy of the FISH

by FirefighterCML (Jan 5)

These are my counts on the FISH. This was the first day I saw my hematologist oncologist. There were some she did right then, I believe it was a smear test. Then the rest were sent

by AlastairC (Jan 5)

Hi
Like a number of people on this forum I made a TFR attempt after a year on half dose of TKI (in my case imatinib). Before that I was on 400 mg for over 10 years. MY BCR-ABL drifted back up after

by scuba (Jan 5)

Got it.
What you should have is a FISH test which counts actual CML cells under the microscope. This test is more useful than PCR (bcr-abl) at the beginning of CML treatment.
The pathologist will
Category: Uncategorised

Replies: 12

Last updated: 6 January 2021
EvaH on 19 April 2017

Category: Treating CML

Replies: 27

Last updated: 5 January 2021

Have you reduced your dosage due to deep response? Share your experience
by CM-elon (Jan 5)

Hi Eva,
I was drawn to this thread as I am due to start dose reduction in a month or so.
I have been on 300mg Nilotinib 2x a day since the end of May 2018 (so 2.7 years). My number has been

by EvaH (Jan 4)

Hi Lucky (and everyone)
Happy to see this thread is up again after some time.
Ok, 4 years, 3 countries and 2 continents later I'm still on 400mg of Imatanib, and still in MMR, and have

by David Fitz (Aug 10)

You might find this interesting as well ...
Once a day nilotinib: A Real Life Observational Study | CML Support
David.

by Lucky (Aug 10)

Hi Scuba,
I looked at the references of the articles you sent me and found a good news for patients who are on nilotinib: “Switching from nilotinib twice daily to once daily at a reduced
Category: Treating CML

Replies: 27

Last updated: 5 January 2021
Lavinia on 22 November 2020

Category: Treating CML

Replies: 12

Last updated: 4 January 2021

Seeking advice: Should I be pushing my doctor to start me on 50mg Dasatinib instead of 100mg if this is early detection?
by Lavinia (Jan 4)

Hi Colleen,
As I still can’t figure out how to DM you I just thought I’d follow up here and see how you’re treatment is going now that you’re a few months in?

by Lavinia (Jan 4)

Hi Kirk,
Thanks for your reply and advice! I find it interesting what drugs people are started on. It seems to be very much based on what country you’re from I’ve noticed. I’ll be

by RC Kirk (Dec 16)

Hi Lavinia,
I'm really perplexed at the lack of urgency your doctors have shown about getting your treatment started. I understand completely why you wanted to take care of the IVF first,

by Lavinia (Dec 16)

Hi Colleen,
Thanks for checking in on me and for sharing more of your first few weeks experience . I actually tried to PM you but I couldn’t figure out how to do it :) How many has it been now
Category: Treating CML

Replies: 12

Last updated: 4 January 2021
alexmcpee on 31 December 2020

Category: Uncategorised

Replies: 6

Last updated: 4 January 2021

Happy new year
by Lisalater35 (Jan 4)

Happy New Year Alex. Thank you for all your help. Hope 2021 is a better year in this crazy CML life.
Lisa

by An (Jan 1)

Happy new year.May this year bring lot of positivity and happiness

by Diane CW (Jan 1)

Yes Happy New Year
I echo everything Alex said, can’t put into words how grateful I am to this site and everyone who contributes, you have made my post CML life so much easier to live

by Roza (Dec 31)

Same to you Alex, you are always on the forum sharing your experiences, caring and advising others. I wish you and your family the best for 2021.
All the best from South London.
Category: Uncategorised

Replies: 6

Last updated: 4 January 2021
mamodei on 29 December 2020

Category: Side effects

Replies: 2

Last updated: 1 January 2021

Depression and dasatinib
by kat73 (Jan 1)

mamodei - I think, CML-wise, you will do fine on 20 mg dasatinib. Reading your vivid account of your experience, I am reminded again at how foolish we are in the Western world to think that

by alexmcpee (Dec 30)

Wow sorry to hear of your struggles with TKI. I’ve often wondered if TKI is effecting my moods or wether it was just knowing that I have CML. I also think my moods this year in particular have

by mamodei (Dec 29)

I've seen a number of people mention depression on various conversations, sometimes attributed to the TKI. I thought I'd share my experience with depression and dasatinib.
I started my
Category: Side effects

Replies: 2

Last updated: 1 January 2021
Mick E on 30 December 2020

Category: Uncategorised

Replies: 3

Last updated: 31 December 2020

Tasigna and thyroid problems
by mamodei (Dec 31)

Low energy. My neck gets very stiff and sore. And my eyes get dry. It is an easy blood test to find out. Good luck.

by Mick E (Dec 30)

Thanks for the reply 😊
How did you feel when your thyroid was causing you problems?

by mamodei (Dec 30)

I was slightly low thyroid, and became more so on both Tasigna and Sprycel. They can interfere with the thyroid med, now right on the list of interactions. It is an easy blood test to

by Mick E (Dec 30)

Hello to all
I have been taking Tasigna over the last year and most of the side effects are tolerable in my current situation. I have noticed over the last few months my exercise
Category: Uncategorised

Replies: 3

Last updated: 31 December 2020