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ShawnJ on 24 March 2021

Category: Blood tests

Replies: 4

Last updated: 14 April 2021

PCR Increase
by ShawnJ (Apr 14)

All,
I am happy to say my latest PCR result is .007. My doctor was really happy with the result and we have decided to try an alternating 20/40 mg of Sprycel. We also discussed my last result which

by ShawnJ (Mar 26)

Thank you for the replies.
Mamodei, I have read a large number of your post and we seem to be fighting similar battles. I have dealt with many of the same side effects. It has been discouraging to

by mamodei (Mar 25)

When I went from Sprycel 50 to Sprycel 20 my BCR/ABL when from 0.0243 to 0.0793 in a couple months. My doctors were not concerned, and my numbers dropped for the next test, and now after a

by Tricky109 (Mar 25)

Hi
Increases or blips as some call them are common not nice at all but can be normal. There is a fantastic facebook group chronic myeloid leukemia uk lots of chats and sharing of experiences it
Category: Blood tests

Replies: 4

Last updated: 14 April 2021
sandy craine on 3 April 2021

Category: Drug-drug interactions

Replies: 5

Last updated: 13 April 2021

iCMLF webinar: Update on COVID-19 vaccines and CML - April 7th 13.30 CET
by Christine R (Apr 13)

Thank you.
I have just had a reply from the iCMLf and they advised that it will available from next week so I will keep on looking.

by sandy craine (Apr 10)

Yes it's quite a challenge to find the relevant links on the iCMLf website... however, try this one https://www.cml-foundation.org/covid-19-hub.html
Sandy

by Christine R (Apr 8)

If anyone can find it on the iCMLf website i would be grateful for a link or a point in the right direction. May just not be there yet.
I should have just taken the GMT time to be the time for

by chrissie (Apr 8)

I logged in at 12.30pm here in he UK and watched it. Very interesting and it has put my mind at rest as both speakers " thought" CMLers would get protection from the vaccines despite our
Category: Drug-drug interactions

Replies: 5

Last updated: 13 April 2021
sandy craine on 12 April 2021

Category: Other conditions

Replies: 3

Last updated: 13 April 2021

Vitamin D Regulates Immune Cells and the Immune Response
by scuba (Apr 13)

https://chicagocrusader.com/high-vitamin-d-levels-may-protect-against-co...

by Sunny (Apr 12)

Thank you so much Sandy.
Pigeon.

by Karinne (Apr 12)

Great article. So glad for this website!!

by sandy craine (Apr 12)

Vitamin D plays a crucial role in regulating immune system activity – both innate and adaptive responses. The innate immune system is responsible for the initial defensive front with a central
Category: Other conditions

Replies: 3

Last updated: 13 April 2021
Damian Gabilondo on 12 April 2021

Category: Uncategorised

Replies: 2

Last updated: 12 April 2021

Doubts about the quality of samples and copies BCR ABL
by Damian Gabilondo (Apr 12)

Thanks for the answer, the laboratory gives its results in IS, but the striking thing is that whenever a lower quantity of copies of BCR - ABL was counted, the results showed increases, and I think

by AlastairC (Apr 12)

Statistically there is no different between your last two test results. The test uncertainty at these very low levels is as large as this variation. It would be useful to confirm that these results

by Damian Gabilondo (Apr 12)

Hello, can someone help me? My last PCR result is RM 4.0% 0.0041 coming from RM 4.5, I have my doubts about the Laboratories and the quality of the sample, since the last result is 4.0 with 60,500
Category: Uncategorised

Replies: 2

Last updated: 12 April 2021
Chca3977 on 11 April 2021

Category: Treating CML

Replies: 5

Last updated: 12 April 2021

Has anybody had a stem cell transplant to help cure CML?
by sandy craine (Apr 12)

I hope his GVHD is not having too much of an impact on his quality of life. He was obviously in a difficult place - Blastic transformation - so I am not surprised they went for full transplant. Even

by sandy craine (Apr 12)

Hi Scuba,
Yes...my PCR tests show BCR-Abl % at 0.0002% and sometimes 0.0001%. My haematologist (Prof. Jane Apperley) just views these results as negative- or as you sometimes refer to this kind of

by Chca3977 (Apr 11)

Hi,

thanks for the reply. So good to hear your now cured and the BCR - ABL undetectable. My boyfriend was diagnosed at the ‘blast’ stage with Full Intensity Haplo transplant 9/10

by scuba (Apr 11)

HI Sandy,
I was curious your statement, "... virtually undetectable"?
Do you still have 'detection' occurring?
Category: Treating CML

Replies: 5

Last updated: 12 April 2021
Ontasigna on 10 April 2021

Category: Treating CML

Replies: 3

Last updated: 11 April 2021

Bcr abl slightly increased
by alexmcpee (Apr 11)

No difference at all. On paper yes in reality no. As far as I understand anything under 0.01% is inconsequential.

by Ontasigna (Apr 11)

Thank you sandy.

by sandy craine (Apr 10)

Do not worry.... there is no significant difference in these results. Sandy

by Ontasigna (Apr 10)

Hi all,
My bcr abl is slightly increased from 0.0014 to 0.0029
Bit worried. Kindly suggest
Category: Treating CML

Replies: 3

Last updated: 11 April 2021
mamodei on 29 October 2019

Category: Side effects

Replies: 11

Last updated: 10 April 2021

Retaining/regaining fitness on dasatinib
by Poppert (Apr 10)

I have the exact same problem. Just walking the stairs at home gives me a heavy breath. I can’t even run 300m without having to walk. I’m 47 and used to be reasonably fit before cml.
I

by mamodei (Nov 28)

I've been working on Jeff's suggestion of maintaining the distance but staying slow. It felt like I was getting nowhere as every time I started to run, even slowly, my breathing could

by Rosiem (Nov 9)

Keep up the good work! I've had to accept that I may never get back to the level of fitness I had before being diagnosed. Before I was diagnosed I suffered all the problems associated with low

by Mick E (Nov 6)

If you plan to run it’s important to keep the legs strong enough for the activity. Walking does very little to maintain the strength needed. Simple things like full range squats,
Category: Side effects

Replies: 11

Last updated: 10 April 2021
Rick B on 26 March 2021

Category: Uncategorised

Replies: 8

Last updated: 10 April 2021

Started TFR
by Rick B (Apr 10)

Thanks for all your support and well wishes. Here is a brief update for those who are interested in TFR:
This is my 16th day without taking 400 mg Imatinib. I cannot believe how well I feel.

by VickyK. (Apr 2)

Good luck!! All the best!

by israel (Mar 31)

Good Luck and have fun in the process

by Lisalater35 (Mar 29)

Good luck....
Category: Uncategorised

Replies: 8

Last updated: 10 April 2021
lgm555 on 31 January 2020

Category: Blood tests

Replies: 15

Last updated: 8 April 2021

One year on Imatinib, not at MMR.
by lgm555 (Apr 8)

Thanks for the suggestions everyone! I saw this thread get revived, but I wanted to wait for my telephone appointment with the oncologist before I posted.
Re-reading my post from before -- it

by scuba (Apr 8)

No doctor should ever recommend a transplant based on imatinib failure in 2021. There are many TKI's now available to try. In fact, several of these 2nd generation drugs are now prescribed first

by sandy craine (Apr 7)

I absolutely agree with others who have questioned your doctors 'attitude'. This is not in my personal experience of being treated by expert CML haematologists over 20 years.
To talk of

by Rae_B (Apr 7)

This really was such a great post - I really appreciate your perspective and I'm very grateful you took the time to write it. Thank you.
Category: Blood tests

Replies: 15

Last updated: 8 April 2021
David Fitz on 9 December 2020

Category: Uncategorised

Replies: 19

Last updated: 7 April 2021

Meeting with Pfizer regarding the BioNTech / Pfizer COVID vaccine
by teddyb (Apr 7)

Thanks for the reply.
I had my shot today, took my Sprycel a few hours after the Pfizer vaccine, so far so good

by Felix (Apr 6)

Hi Teddy, I had the Pfizer Vaccine and my TKI with no problems and absolutely no side effects at all ,so don't think about it just do it .Denise.

by teddyb (Apr 6)

Hello Sandy.
I am just thinking of taking the vaccine and TKI together might be a bit hard on the body. (In regards to side effects etc)
Maybe i am completely wrong thinking this, but would be

by sandy craine (Apr 3)

Hi Teddy,
Why do you think it would be preferable to skip your TKI on the day you have the vaccine?
Sandy
Category: Uncategorised

Replies: 19

Last updated: 7 April 2021
Alaina on 6 April 2021

Category: Uncategorised

Replies: 0

Last updated: 6 April 2021

Miristen
by Alaina (Apr 6)

Does anyone have updates on the Miristen studies? I tried searching and didn't find anything recent.
Category: Uncategorised

Replies: 0

Last updated: 6 April 2021
philmc on 27 February 2021

Category: Uncategorised

Replies: 9

Last updated: 6 April 2021

First BCR/ABL uptick
by ColoradoGuy (Apr 6)

It seems like a smart switch because Nilotinib approaches the disease very similar to Imatinib. I would not be surprised to see it come down. My doctor did switch me when I went above 1.

by philmc (Mar 26)

I'm not sure how it works here and whether the labs have access to that info. I'm not sure why it takes so long though (something fundamental about how PCR tests work that I don't

by gbatalha (Mar 24)

Labs should implement a simple rule ... if it's going up instead of down retest using the same batch. I would gladly pay for them to do it!
From the patient’ mental standpoint it

by An (Mar 24)

Upticks are anxiety inducers...happy for you...onward and downward :)
Category: Uncategorised

Replies: 9

Last updated: 6 April 2021
bendicco on 30 March 2021

Category: Uncategorised

Replies: 3

Last updated: 5 April 2021

So confused!
by bendicco (Apr 5)

Thank you everyone!

by sandy craine (Apr 3)

Take a look at the link below from another post that you may have missed (by Scuba) which seems to indicate the TKI therapy may reduce the risk of serious outcomes from a Covid infection.
cml-

by ColoradoGuy (Apr 2)

I had it in November and it was like a cold that would not totally go away for like 10-12 days. That being said, I am 40 so not in the at risk age group. It is real so stay safe but IMHO

by bendicco (Mar 30)

I have CML diagnosed 3 years ago. In my mid 60’s. On Gleevec numbers not detectable. My 79 year old partner and myself have received both our Covid vaccines about a month ago.
my
Category: Uncategorised

Replies: 3

Last updated: 5 April 2021
kathvaliao on 26 February 2021

Category: Children & young people

Replies: 8

Last updated: 30 March 2021

Pregnant and Suspected to have CML
by daniellaw (Mar 30)

Hi Kathleen
Sorry to hear about all the worries you are having at the moment. I completely understand as I was diagnosed with CML when I was 14 weeks pregnant with my second son. That was almost 19

by MartinZA (Feb 26)

Hi Kathleen
It is treated, for most of us, through oral medications that are taken once or twice a day. The medications have a very high success rate and, even though they can't cure the disease,

by kathvaliao (Feb 26)

Thank you so much, Sandy!
That’s good news to me. I get worried lately most especially for my baby not just for me. I feel guilty that I might give him a condition because I’m not

by kathvaliao (Feb 26)

Thank you so much, Martin!
Your words encourages me. I most of the time overthink about my condition. Hearing from you makes me less worried.
I actually don’t feel any symptoms right now. I
Category: Children & young people

Replies: 8

Last updated: 30 March 2021
Tanya Cuffe on 26 March 2021

Category: Uncategorised

Replies: 2

Last updated: 26 March 2021

Was non detectable now am not...
by Tanya Cuffe (Mar 26)

Thank you Scuba.You have given me peace of mind and I think you’re awesome:)

by scuba (Mar 26)

Any PCR measure below 0.01% is indistinguishable from "undetected" in terms of PCR precision and accuracy. Your result is in the noise of the test.
Stay your course and at next test

by Tanya Cuffe (Mar 26)

Hi friends, I was non detectable for 18 months on 20 mg Sprycel,last bloods I am >0.003. Is this a cause for concern? Should I raise my dosage? I have no idea what to do as my Haemotologist
Category: Uncategorised

Replies: 2

Last updated: 26 March 2021
scuba on 26 March 2021

Category: Uncategorised

Replies: 0

Last updated: 26 March 2021

CML - Covid - TKI's may offer protection
by scuba (Mar 26)

Many on our forum are concerned having CML exposes you to a higher Covid risk.
Evidence is emerging the opposite may, in fact, be true:
Case Study Shows Potential Protective Effect of TKI Therapy
Category: Uncategorised

Replies: 0

Last updated: 26 March 2021
Janet Treble on 22 March 2021

Category: Side effects

Replies: 10

Last updated: 26 March 2021

Advice needed please!
by Zaccar (Mar 26)

Hi!
They have no justifiable reason to start you on that strong a dosage. Nilotinib 800mg is very high, even if you have a high sokal score. Ask them to lower the dosage.

Good

by Mick E (Mar 26)

Hello Janet
Sorry to hear you’ve had so many problems with the meds so far! I went through similar problems and changes of meds until I was settled on Nilonotib. Initially I

by David787 (Mar 25)

Fingers crossed for the clinic Janet.
David

by Janet Treble (Mar 25)

Thanks for your reply, it really sounds like you had an horrendous time! Im back at clinic this afternoon to see what they say, staying positive for a more productive outcome!
Category: Side effects

Replies: 10

Last updated: 26 March 2021
steven7 on 6 March 2021

Category: Side effects

Replies: 9

Last updated: 26 March 2021

dasatinib side effect
by steven7 (Mar 26)

Can you share what PCR level did you reach so that your doctor allow lowering the dosage?

by mamodei (Mar 25)

You can cut the 100 mg pills with a pill cutter to get 50. My doctor had me do that until the 50s arrived.

by steven7 (Mar 25)

Thank you Shawn. Can you please share the research of lower dosage reaching same efficacy?

by ShawnJ (Mar 25)

Steven,
I too have had similar side effects to yours on Sprycel. I have been taking it a little over a year. I have heart palpitations controlled by beta blocker and blood pressure controlled by
Category: Side effects

Replies: 9

Last updated: 26 March 2021
Vikram varma on 17 October 2020

Category: Getting help

Replies: 11

Last updated: 24 March 2021

About marriage
by sandy craine (Mar 24)

Please us the direct message to contact individuals members of this forum. If you click on the envelope on the header bar you can send a message to individual members.
thanks for your understanding

by Beulaparthiban (Mar 23)

We are seeking a groom for our sister who is on Imatinib medication. If you are interested call this number deleted by moderator

If you wish to contact an individual please use a direct message -

by Beulaparthiban (Mar 23)

Can you please share your matrimony profile ?

.we are interested to know about you

by Beulaparthiban (Mar 23)

Hello
Category: Getting help

Replies: 11

Last updated: 24 March 2021
Kathyp on 21 March 2021

Category: Uncategorised

Replies: 7

Last updated: 23 March 2021

Tki and Tendinitis
by Buzzm1 (Mar 23)

Kathy, for your own health you should at least reduce your Glivec dosage to as low as possible as soon as possible. In the early years of Glivec it was customary to start CML patients on 600mg

by Kathyp (Mar 23)

Thank you for your reply , I was on 600 mg for along time then reduced to 400mg , I have every faith in my Haematologist , he has mentioned reduction again but I’m scared to do so I don’

by Buzzm1 (Mar 23)

Kathy, TKIs, especially at the high starting dosage, are toxic medications. The more we take over the longterm the higher the probability of problems. There's a high likelihood that

by Kathyp (Mar 23)

Yes I am for the last 13 years . Why wouldn’t I still be taking it? It’s working so I haven’t changed drugs
Category: Uncategorised

Replies: 7

Last updated: 23 March 2021