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Ontasigna on 28 October 2021

Category: Treating CML

Replies: 2

Last updated: 28 October 2021

RTPCR results - interpretation
by Ontasigna (Oct 28)

thanks scuba!!

by scuba (Oct 28)

Yes, indeed you should worry. You will need to worry about how to pay for retirement because you are going to live a long life.
You need to worry about your heart health and other things instead of

by Ontasigna (Oct 28)

Hi All
Below are the results of my test today. The observed copies of ABL1 seems to be less.
Anything to worry??
P210 (b3a2, b2a2) major transcript Not detected
P190 (e1a2) minor transcript Not
Category: Treating CML

Replies: 2

Last updated: 28 October 2021
mil on 13 October 2021

Category: Uncategorised

Replies: 2

Last updated: 27 October 2021

Vit A
by mil (Oct 27)

Thanks John for your time and your answer.

by johnw1001 (Oct 21)

Regarding supplementation the best readable source that I have found is "Lifestyle after Cancer" by oncologist Professor Robert Thomas.He states that "Vitamin A is a fat soluble

by mil (Oct 13)

Hi guys,
Any of you know about vit A supplementation? Will it be fine to take it?
Thank you in advice
Category: Uncategorised

Replies: 2

Last updated: 27 October 2021
mil on 27 October 2021

Category: Uncategorised

Replies: 0

Last updated: 27 October 2021

Genital warts and cml
by mil (Oct 27)

Hi guys,
When i was diagnosed with CML(1y6m), a few months later i noticed i had genital warts, so i went to the dermatologist and she applied cryotherapy and i had an excellent response but
Category: Uncategorised

Replies: 0

Last updated: 27 October 2021
Poppert on 1 August 2018

Category: Blood tests

Replies: 6

Last updated: 26 October 2021

Time to get PCR test result?0
by jonnie turpie (Oct 26)

Hello

As I am 3 months into CML treatment I am attending for my first PCR test next week.
I read the PCR leaflet you provided the link for and found it very clear in its explanation of

by Poppert (Aug 1)

Ok, I thought maybe they had machines for that and that PCR-analysis was quick.
It was apparently important that I took the samples in the afternoon so it could go fresh with a transport to the lab

by Nimbus2 (Aug 1)

I love all this help and the little ideas. Thank you, Chrissie. I am learning quickly.
For the moment, I am being treated like Royalty. I pop into the newly opened haematology unit in Solihull

by chrissie (Aug 1)

Hi Stephen
This is not relevant to you right now as a newly dx patient but it may be useful to you later.
I have 3 monthly PCR tests done at my local hospital. To avoid the long wait
Category: Blood tests

Replies: 6

Last updated: 26 October 2021
sandy craine on 1 July 2020

Category: Uncategorised

Replies: 14

Last updated: 24 October 2021

Sorry to go on about Vit D3 levels and immunity but......!
by Nimbus2 (Oct 24)

Thank you again, Sandy, for your ongoing advice.

by David787 (Oct 23)

Yes in total agreement with you Sandy, thanks for all the information.
David

by sandy craine (Jul 5)

Hi Diane,
Vits/minerals are food supplements so most are best taken with a meal. I take all my days supply with breakfast. It's a good idea to get your D3 level tested.
Sandy

by chrissie (Jul 5)

No but I will ask my haem on our next phone appt in 2 weeks.
best
Chrissie
Category: Uncategorised

Replies: 14

Last updated: 24 October 2021
johnw1001 on 1 September 2021

Category: Treating CML

Replies: 77

Last updated: 24 October 2021

Third or booster Covid jab for "vunerable" patients in UK
by Nimbus2 (Oct 24)

This is another take on the situation:
https://www.independent.co.uk/voices/covid-vaccine-uk-immunosuppressed-p...

by Nimbus2 (Oct 24)

I have responded, John, to your private message. Something is very wrong. My GP indicates that no information has been received from the specialist. The trust flatly refused to talk to me as an

by johnw1001 (Oct 24)

Nimbus I have sent you a private message -on receipt may we discuss a possible course of action further.
This shows a total dereliction of duty by a consultant/NHS trust and a difficult GP .
The

by Nimbus2 (Oct 24)

After weeks, my GP will not move forward with the Third Primary Dose without a consultant's letter. The hospital trust will not speak to patient individually. So I am locked out.
Freedom of
Category: Treating CML

Replies: 77

Last updated: 24 October 2021
Ontasigna on 21 October 2021

Category: Treating CML

Replies: 2

Last updated: 22 October 2021

Nilotinib Night sweat and severe joint pain
by Tanya (Oct 22)

Hi, I'm on Tasigna from May 2021 and experienced the same problems in mid August when heat wave lasted 4 weeks - up to +40C in the shadow.

Unfortunately it was in combination with my second

by sandy craine (Oct 22)

Hi, you may have some kind of infection. Do you have access to your most recent PCR result?
Sandy

by Ontasigna (Oct 21)

Hi All
Recently, I got exposed to high temperature(32 deg centigrade). Since then I have been having severe joint and muscle pain and night sweats like I used to have before diagnosis.
I am on
Category: Treating CML

Replies: 2

Last updated: 22 October 2021
VickyK. on 21 October 2021

Category: Side effects

Replies: 0

Last updated: 21 October 2021

High prolactin and nilotinib
by VickyK. (Oct 21)

Hello!Hope you are all well☺️

Has any of you experienced high prolactin (hormone) during treatment with nilotinib or any other TKI??
Vicky
Category: Side effects

Replies: 0

Last updated: 21 October 2021
Betty8 on 20 October 2021

Category: Treating CML

Replies: 5

Last updated: 21 October 2021

Your expert advice needed pls- 2 Failed TKI's, BCR ABL 29%... what next?
by wshi2001 (Oct 21)

Hi, Betty,
Have you tried Nilotinib yet? I also started with imatinib, it did not work so well. Then I was switched to Dasatinib, similarly, it gave me a lot of side effects. I asked my

by Betty8 (Oct 20)

Thankyou so much for your quick response Scuba.
I have a meeting with my haematologist tomorrow so will tell them about your experience with Dr. Jorge Cortes then.
it’s reassuring to

by scuba (Oct 20)

I understand now. I went through a similar phase. Although my doctors waited until my neutrophils fell to 0.4 before stopping dasatinib.
What they did for me and I suggest for you in consultation

by Betty8 (Oct 20)

Hi Scuba.
I was diagnosed last August 2020.
They stopped my Dasatinib last week as my blood counts were low and wanted to give me a week break to see if they stats recovered.
BCR ABL 29% /
Category: Treating CML

Replies: 5

Last updated: 21 October 2021
shayner on 19 October 2021

Category: Uncategorised

Replies: 5

Last updated: 20 October 2021

Discontinuing imatinib
by AlastairC (Oct 20)

Yes I am very busy with work and enjoy it most of the time. You may well have to ask to get Vit D tested - it is not in the normal list of tests they do - probably should be, especially in Covid

by shayner (Oct 20)

I really need to find these things out! At my hospital I’m under general haematology and they really only manage me generally as I’ve been so stable so long and I think I’m the

by AlastairC (Oct 20)

My vitamin D was tested a few weeks ago at 76 mmol/litre, which is about 30 ng/ml. I want to get to around 60-70 ng/ml - I suspect some people would say a bit higher than that. I recently started

by shayner (Oct 20)

Thanks Alistair. I reduced myself to 200mg a couple of years ago because of the tiredness in an effort to get a bit more energy, but it didn’t effect the side effects at all. The reason I
Category: Uncategorised

Replies: 5

Last updated: 20 October 2021
Karinne on 14 October 2021

Category: Uncategorised

Replies: 19

Last updated: 18 October 2021

My pcr result after 3 years without Sprycel is still undetected
by Karinne (Oct 18)

Thanks

by Karinne (Oct 18)

Thanks

by VickyK. (Oct 18)

Congrats Karinne!!!Continue like that!!!I wish you all the best from my heart!

by Karinne (Oct 18)

Yes. Keep trying
Category: Uncategorised

Replies: 19

Last updated: 18 October 2021
scuba on 15 October 2021

Category: Uncategorised

Replies: 7

Last updated: 18 October 2021

Treatment Free Remission (TFR) update:
by VickyK. (Oct 18)

That's great news Scuba!!!So happy for you!!!Keep going!All the best of luck!!!

by onekayaker (Oct 18)

Great news Scuba!!!!

by sandy craine (Oct 16)

Dear Scuba,
Great news. 'Cure' ? well what does cure mean anyway. Enjoy TFR and everything else, including Belize. Sandy

by Patch (Oct 16)

That's Fantastic News fingers crossed for you enjoy.
Category: Uncategorised

Replies: 7

Last updated: 18 October 2021
sandy craine on 18 October 2021

Category: Uncategorised

Replies: 0

Last updated: 18 October 2021

3rd Vaccine/booster
by sandy craine (Oct 18)

If any of you are considering a booster/3rd vaccine you would do well to watch this video by Dr. John Campbell on vaccine administration aspiration technique.
Category: Uncategorised

Replies: 0

Last updated: 18 October 2021
kat73 on 7 September 2020

Category: Uncategorised

Replies: 9

Last updated: 15 October 2021

Need a quick answer: Which statin with dasatinib?
by stpaddy (Oct 15)

Thanks for the update Kat73. Glad to hear that you didn't need to take one after all and that things are going well without a statin - good news indeed.

by kat73 (Oct 8)

Well, luckily, I didn't end up having to take one. I got a perfect score (zero) on the Coronary Artery Calcium scan, and that convinced my GP (who re-calculated my risk) that I didn't

by stpaddy (Oct 4)

I see this is an thread from last year but just wanted to mention that my spouse is now dealing with high cholesterol. He's been on 70 mg Sprycel since 2018, does not eat food that is high

by kat73 (Sep 11)

Thanks, Nimbus. As I thought, no answer from the onc on the question of cardiovascular disease starting to show up in long-time dasatinib patients. I broke the sacred doctor message rule
Category: Uncategorised

Replies: 9

Last updated: 15 October 2021
scuba on 13 October 2021

Category: Uncategorised

Replies: 4

Last updated: 15 October 2021

Vitamin D level test results
by cmljax (Oct 15)

My last test was 75 (up from 38 4 years ago). I take 5,000 per day unless I have significant sun exposure, like on Mondays when I play golf. I am a huge believer in this Vitamin D stuff all

by scuba (Oct 14)

Antibody testing does not inform immunity for the reasons I cited above in my post. And the medical establishment knows this.

https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2021

by Faith_05 (Oct 14)

Hi Sandy!
I am thinking my third dose!!I am not sure yet.
But I am a teacher in high school, so i worry a little.
My doc told me to do it. I did an antibody test and the result was 972 AU/mL (

by sandy craine (Oct 14)

Thanks for this Scuba. It's timely for me as my haematologist called me yesterday to talk about whether I have been offered a 3rd vaccine. I am not too sure that I need or want a third vaccine
Category: Uncategorised

Replies: 4

Last updated: 15 October 2021
mil on 29 September 2021

Category: Uncategorised

Replies: 7

Last updated: 12 October 2021

advice
by mil (Oct 12)

Hi Sandy,
Sorry for replying late; yes, i can identify “the days”, it’s usually when i eat kind of “greasy food” like fries or wings, and sometimes also when the

by sandy craine (Oct 1)

Hi Mil,
if you forget to take or vomit after taking it, I think the general advice is to wait until the next day. Can you identify why on certain days you cannot tolerate imatinib?
I used to take

by mil (Oct 1)

Thank you so much for all your recommendations guys. I really appreciate them. Yes, I do take imatinib with plenty of water and i usually tolerate it well, but there are some days that i just can

by Ismo (Sep 30)

Take after a meal with glass of water and don't lie down for half an hour. I had exactly the same problem in my first few weeks of imatinib on the daily 400 tablet eventually eased off a
Category: Uncategorised

Replies: 7

Last updated: 12 October 2021
SS86 on 8 October 2021

Category: Side effects

Replies: 8

Last updated: 12 October 2021

Change of Drug advised ! Scuba, David, John Seek your guidance
by SS86 (Oct 12)

Thank you, Scuba. This is helpful

by scuba (Oct 11)

Dasatinib is an Src inhibitor which can trigger neutrophilic dermatoses.
See the pictures in the article below. If your wife's look similar, it's distinctly possible this is what is

by SS86 (Oct 10)

Thank you, David. The reaction wasn’t like the Stephen -Johnson (hopefully) . The doctor who has recommended us a reduced dose is saying that the body should be able to take 50 mg while the

by David Fitz (Oct 9)

There is not much detail to go on, but if the reaction is something like Stephen-Johnson syndrome, then it’s not to be messed with and reintroducing the drug could cause problems. If the
Category: Side effects

Replies: 8

Last updated: 12 October 2021
ishb1 on 7 October 2021

Category: Uncategorised

Replies: 8

Last updated: 10 October 2021

Nilontinib
by Christine R (Oct 10)

I would agree that there is no point taking more than is needed and i believe the recommendation on dosage of Nilotinib was reduced from 400mg twice a day to 300mg twice a day some years ago. i also

by Buzzm1 (Oct 10)

Christine R, the longer you take a high TKI dosage, the greater the probability of suffering TKI induced side-effects; some of which may be permanent. It makes absolutely no sense to take more

by Christine R (Oct 9)

I noticed a few posts about long term use causing problems but when i did an online search i can't find any scientific research to this effect. My haematoligist is of the opinion that unless there

by Buzzm1 (Oct 9)

Naj, I can't help but ask, after almost five years I would think you should be on a greatly reduced Nilotinib dosage? Many CML patients, if not most, take far more TKI than they need.
Category: Uncategorised

Replies: 8

Last updated: 10 October 2021
AlastairC on 21 September 2021

Category: Blood tests

Replies: 9

Last updated: 9 October 2021

Larger sample required for BCR-ABL?
by David Fitz (Oct 9)

Just reporting back from Bart’s, where I was on Friday. Just a single lavender (I don’t know why they aren’t just called purple!) for the BCR-Abl PCR test. Of course that’s

by nicolaclubb (Oct 8)

At my local hospital I have alway had 5 ‘purple top’ vials taken for my BCR which get put into a separate bag to be sent to Kings. When Iv had my BCR taken at kings it’s also been

by Felix (Oct 4)

Hi, Alastair ,had my bloods done today and nobody knew about any changes in quantity of sample for BCR ABL.They rang thru to someone to check ,not sure if they actually rang Liverpool tho and the

by chrissie (Sep 28)

I see different phlebotomists most times at my GP surgery and they take out the EDTA files and fill at least 2 sometimes 3 for the BCR ABL in the belief that the more the better. I am the only
Category: Blood tests

Replies: 9

Last updated: 9 October 2021
Nimbus2 on 8 October 2021

Category: Uncategorised

Replies: 3

Last updated: 9 October 2021

State of the body
by Nimbus2 (Oct 9)

I do not know whether melanin is a measurable thing. My optometrist did observe that my melanin is unusually low. I protect myself very carefully from the sun. I take vitamins D3 and vitamin K2.

by Nimbus2 (Oct 9)

Thank you, Kat, for your posting. It is indeed very interesting and very helpful.
My problem is "fatigue" which I would describe as being more physical than mental.
I started to lose my

by kat73 (Oct 8)

Nimbus - Excellent questions. My onc always told me, "It's the TKI, not the CML" whenever I complained of anything, especially fatigue. On that, he also said, "ALL my CML

by Nimbus2 (Oct 8)

If a person has been diagnosed with CML but subsequently achieves a sustained MMR, putting TKI damage aside will that person's body have been permanently damaged in any way by the leukaemia?
Category: Uncategorised

Replies: 3

Last updated: 9 October 2021