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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
Jmbnccyn on 16 December 2020

Category: Getting help

Replies: 9

Last updated: 27 December 2020

New in this, fear, anxiety, doubts ..
by afc (Dec 27)

Sorry for the late response Jmbnccyn :)
In the beginning it was hard to handle it because I wasn't aware how effective this type of medication is so I was kind of pessimistic. In the beginning I

by Jmbnccyn (Dec 22)

Hello Alex, thank you very much for your long and complete answer, I have read it several times to clarify as much as possible about the experiences and opinions of other people like you who are

by alexmcpee (Dec 21)

Hi J
I’ve been meaning to reply to your message for a few days.
When I was diagnosed at 37 I thought god I am too young for this having been told it was an “old” persons disease

by Jmbnccyn (Dec 20)

Hello, I am glad that you are well at the moment and I appreciate your answer, if it is not annoying, since you are also Spanish and you were diagnosed young like me, perhaps I would like to ask you
Category: Getting help

Replies: 9

Last updated: 27 December 2020
Diane CW on 24 December 2020

Category: About CML

Replies: 6

Last updated: 27 December 2020

Happy Christmas
by Lisalater35 (Dec 27)

Happy Holidays. Hope 2021 is better!

by Lisalater35 (Dec 27)

Happy Holidays. Hope 2021 is better!

by snowman 35 (Dec 25)

Marry Christmas to everyone! I wish health and happiness in 2021z

by snowman 35 (Dec 25)

Marry Christmas to everyone! I wish health and happiness in 2021z
Category: About CML

Replies: 6

Last updated: 27 December 2020
aliensheep0 on 23 December 2020

Category: Treating CML

Replies: 2

Last updated: 23 December 2020

No BCR-ABL Mutations
by johnw1001 (Dec 23)

Hi
I would tend to agree with Alex that it seems strange that you have been put on Bosutinib at such an early stage.
Normally the progression might be to still start on imatinib and if found

by alexmcpee (Dec 23)

Hey there
Its strange that they won’t try Nilotinib or Dastinib before trying Ponatinb because if a mutation wasn’t found then maybe either of those would work too. It’s also quite

by aliensheep0 (Dec 23)

After my 2nd bone marrow biopsy, it was found that I was resistant to Bosulif, and my Hematologist orders a chromosomal test to find any mutations.
I discussed the results and they found no bcr-abl
Category: Treating CML

Replies: 2

Last updated: 23 December 2020
ipmaki on 22 December 2020

Category: Food & fitness

Replies: 4

Last updated: 23 December 2020

Impact of Sauna on CML
by alexmcpee (Dec 23)

Blimey the Wildfires I presume. Gosh that must have been an adrenaline and cortisol fulled event for you in the emergency services. Personally I believe stress hormones over an extend period may be

by ipmaki (Dec 23)

Thanks for the replies Alex and William. Yes, I used to take saunas after workouts as well and found it helped with muscle soreness and also better sleep. I don't expect the sauna caused the

by alexmcpee (Dec 23)

I have had a number of Saunas over the years when I used to visit the gym. The steam room and the Sauna I used mostly after a workout. I could probably count that I’ve had maybe 20-30 in my

by William1567 (Dec 23)

I don't have any science on this, only a coincidental anecdote. A few days before I was diagnosed with CML, I was in a sauna and suddenly felt weak and faint, to the point where I had to crawl
Category: Food & fitness

Replies: 4

Last updated: 23 December 2020
snowman 35 on 20 December 2020

Category: Drug-drug interactions

Replies: 6

Last updated: 23 December 2020

Does anyone do that? Please reply...
by snowman 35 (Dec 23)

Hi PhillipDavid

I do weight training too! It has been a part of my life and before cml

My doc has forbidden every supplement like protein, creatin etc... He told me that maybe will

by PhilipDavid (Dec 22)

Hi

re - supplements. I do weight training/resistance training. It’s always been part of my life style before and after CML.
I have had the conversation a few times

by snowman 35 (Dec 21)

Hi Alex!! Yes I have ocd!!

I have periods that I totally control it and periods that I can 't.

I ve done cognitive behavioural therapy for 2 years and that is why I can live without

by alexmcpee (Dec 21)

Hey Snowman
It sounds to me you’re having a case of OCD. Do you have a history of this? I can also have OCD traits at times and it is normally brought on by extended periods of stress and
Category: Drug-drug interactions

Replies: 6

Last updated: 23 December 2020