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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
jaideepdoc on 1 August 2020

Category: Treating CML

Replies: 9

Last updated: 23 December 2020

Jump in PCR ABL after 2 yrs
by jaideepdoc (Dec 23)

Hi
so the mutation results came with the T315 type. so keeping in mind that there no other issues doctor started me on ponatinib 30 mg as a starter dose.
i have responded well and with the bcr

by Praa (Oct 6)

Hi,
Now what heapn

by Praa (Oct 6)

Hi,
Now what heapn

by Praa (Oct 6)

Hi,
Now what heapn, any mutions or what abt your bcr /abl teat result.

Any mutiastion or same medician your contuning.
Thanks

Ra
Category: Treating CML

Replies: 9

Last updated: 23 December 2020
scuba on 9 April 2020

Category: Uncategorised

Replies: 13

Last updated: 22 December 2020

Vitamin D / Covid-19 - more than anecdotal
by scuba (Dec 22)

Additional support for vitamin D's impact on Covid: Support from leading scientists to world governments including U.K.
https://www.nutraingredients.com/Article/2020/12/21/Experts-send-Vitamin

by scuba (May 1)

Update:

I wanted to share this with everyone - just had my blood tested for vitamin D yesterday (quick turnaround!) and the reading was 52 ng/ml.
I was actually quite surprised it was this low! I

by sandy craine (Apr 30)

Hi Sandrea,
Thanks for sharing this image/graph. It's a really helpful way to explain what we are talking about re: Vit D3. I too read the grassroots health.net blog
Sandy

by scuba (Apr 29)

Sandrea,
Outstanding ! Thank you for the visual - should help me explain to my neighbors.
However, most of my neighbors won't believe anything (on what can help) unless it is a headline on their
Category: Uncategorised

Replies: 13

Last updated: 22 December 2020
David Fitz on 30 April 2019

Category: Uncategorised

Replies: 25

Last updated: 21 December 2020

Dasatinib dose reduction not going quite to plan
by mamodei (Dec 21)

My BCR/ABL also went up when I dropped from 50 to 20, but then started going back down.
11/13/2020 - 0.0345
8/10/2020 - 0.0671
4/27/2020 - 0.0793
2/10/2019 - 0.0243

by David Fitz (Dec 12)

It usually doesn’t take long - depends on when one of the admin’s get around to it!
I’ve just approved you.
David.

by David787 (Dec 12)

Hello David,
Sorry this is a bit off post! I see that you are admin to the facebook group, which I have applied to join. Does approval take very long?
All the best
David

by sbp03 (Dec 11)

Forwarding an article about lowering Nilotinib dose.
https://undark.org/2020/12/09/cancer-drugs-less-might-be-more/
Category: Uncategorised

Replies: 25

Last updated: 21 December 2020
Lisalater35 on 18 December 2020

Category: Children & young people

Replies: 8

Last updated: 20 December 2020

First Oncologist appointment today
by Lisalater35 (Dec 20)

No Alex I don’t know my baseline. All Dr told me was my bone marrow looked good just lukemic cells.

by Lisalater35 (Dec 19)

Thank you snowman. It’s hard understanding the lingo.

by snowman 35 (Dec 19)

Your response to the treatment is very good!! The first pcr always is after 3 months to see were you bcr-abl is in your blood.it is too soon to do a pcr now... Great news Lisalater 35!!

by alexmcpee (Dec 19)

That’s about normal then slightly below I think the norm is 4-11 or there abouts I am sure it’ll level off just fine. You’re responding blood wise and that’s almost a given
Category: Children & young people

Replies: 8

Last updated: 20 December 2020
Faith_05 on 4 December 2020

Category: Uncategorised

Replies: 6

Last updated: 19 December 2020

Vaccine-covid19
by Faith_05 (Dec 19)

I asked my doctor. He told me I could do it and it's safe. To tell you the truth, I want to do it as soon as possible, but I do not know when it will be available in Greece for us.
Faidra

by AEHUGHES (Dec 19)

Hi first time I’ve posted. I was diagnosed with CML in January 2018 being treated with imatinib.My PCR has been stable around 0.01. I work for the NHS and am due to get my first Pfizer vaccine

by sandy craine (Dec 9)

Live vaccines are not recommended for those diagnosed with CML. The current (Pfizer/biontech) vaccine being rolled out now in the UK is not a live vaccine. However, it seems the news today is for

by Faith_05 (Dec 8)

Thank you both for your replies! John, I agree with you!
I am from Greece, and here the vaccine will come in about a month! I think the hospital staff will be vaccinated first. At my next
Category: Uncategorised

Replies: 6

Last updated: 19 December 2020
xero on 18 December 2020

Category: Side effects

Replies: 0

Last updated: 18 December 2020

Tasigna and hair transplant
by xero (Dec 18)

Hi everyone!
First of all, thank you for all your threads and replies on this forum, it was a big help for me. My question today is simple : Can Tasigna (300mg/day) prevent the success of a hair
Category: Side effects

Replies: 0

Last updated: 18 December 2020
Ray Sell on 9 September 2020

Category: Treating CML

Replies: 32

Last updated: 17 December 2020

Switiching from Imatinib to sprycel
by argearge (Dec 17)

An update. Just my results back. After 30 months 0,13% IS with imatinib 600. No need yet to switch to dasatinib. My onc wants to try dasatinib 50mg if the imatinib will fail. 3 months ago my results

by RC Kirk (Nov 17)

It's been nearly three years ago, so my memories aren't too fresh. IIRC it was only a few days before I noticed the irregular beats. I started at 100mg/day, then went down to 50

by Ray Sell (Nov 16)

RC Kirk
It took 11 days from starting to start giving me IHR. I felt lots better on Sprycel. Did things because I wanted to, not because I had to.
How long did it take for yours to

by RC Kirk (Nov 16)

Hi Ray,
Your experience changing from imatinib to dasatinib is very similar to mine. I experienced irregular heartbeats when starting dasatinib. The worst was when I had an episode of
Category: Treating CML

Replies: 32

Last updated: 17 December 2020
Mari_lyn on 10 November 2020

Category: Uncategorised

Replies: 31

Last updated: 16 December 2020

Advice on 3 months mark /new here
by Mari_lyn (Dec 16)

Thank you so much Sandy for the helpful info, I will definitely order some extra supplements. And with K2 combined is probably better, I read. Hopefully they’ll still deliver in time

by sandy craine (Dec 14)

Hi Marilyn,
I take a D3 supplement that includes K2 in a 'correct' percentage. K2 is recommended to ensure that D3 - at higher doses than is officially recommended - does not leach calcium

by Mari_lyn (Dec 10)

Thank you Sandy for your kind reply.
Yes, the measurement here is the same as in the UK: nmol/l. My GP didn’t even know that but I’ve researched it.
My level of

by sandy craine (Dec 9)

Hi Marilyn
"....Also, short update: Had my appointment. The haematologist consulted with one of the best CML experts here, and they advised me to go on Sprycel 100mg now. I've discussed the
Category: Uncategorised

Replies: 31

Last updated: 16 December 2020
VinayJagnani on 14 December 2020

Category: Food & fitness

Replies: 2

Last updated: 16 December 2020

CML care with Wheat Grass and Yoga
by Vikram (Dec 16)

Hii vinay..
I try wheat grass yoga and giloy (Tinospora cordifolia) neem tree wala.. Fresh.....

by alexmcpee (Dec 14)

Interesting.
I started practicing mindfulness meditation when I was diagnosed and it’s changed my life. The form where you focus on your breathe. Been doing it for 3 years pretty much daily

by VinayJagnani (Dec 14)

Hello All,
I was diagnosed with CML around 2 years and 3 months and I have already received 2 reports with Not Detected till now. I am on Imatinib 400 for now.
To support my medicine for CML, I
Category: Food & fitness

Replies: 2

Last updated: 16 December 2020
Nshah on 13 December 2020

Category: Blood tests

Replies: 2

Last updated: 15 December 2020

Nucleated RBC
by Nshah (Dec 15)

Thanks Sandy😊

by sandy craine (Dec 14)

It may indicate that your bone marrow is under pressure. See excerpt from Wikipedia below. It might indicate in your case that you have a low red cell count with can indicate anaemia?
Sandy
A

by Nshah (Dec 13)

Hi everyone
Hop you all are doing great in these tough times.
I have been on imatinib for past 18 months.From last two cbc I am having nucleated RBC.I wanted to ask if anybody have had
Category: Blood tests

Replies: 2

Last updated: 15 December 2020