You are here

Forum

Kimbie3116 on 27 February 2021

Category: Treating CML

Replies: 6

Last updated: 9 November 2021

Help! Mouth sores with Imatinib???
by jonnie turpie (Nov 9)

Thanks Very much. I will try this.

Jonnie

by sandy craine (Nov 9)

Mouth sores/canker sores/sore tongue etc. can be a sign of vitamin B12 deficiency. Imatinib (or other TKI) may well be indicated in suppressing your red blood cells count - HGB, B12 can help support

by jonnie turpie (Nov 9)

Hi
I am sorry you are experiencing these mouth sores and hope you might be feeling better.
After 3.5 months of taking 400mg Imatintib I have developed a sore throat and mouth ulcers on the

by alexmcpee (Feb 27)

I’ve been having fairly persistent Geographic Tongue since being Nilotinib but no other mouth sores. This is defo TKI as they started when I started meds. They don’t hurt they are just a
Category: Treating CML

Replies: 6

Last updated: 9 November 2021
johnw1001 on 29 October 2021

Category: Blood tests

Replies: 6

Last updated: 6 November 2021

What does antibody testing for Covid tell us ?
by scuba (Nov 6)

Just to emphasize a key point - it's not about antibodies. It's about T-cells.

https://thepoliticsofduh.com/2020/09/27/t-cell-immunity-what-fauci-and-t...

T-cells is what protects you from

by johnw1001 (Oct 30)

Hi Christine,
So with the NHS test you presumably were not given a score?
Looking at some of the private ones such as Roche which some labs use the range in terms of the positive score is from 0.8 u

by Christine R (Oct 30)

Hi John
I was given an anti body test at me treating hospital and the result was half that of a normal healthy person but there is still not a level that i am aware of that is known to be an optimal

by scuba (Oct 29)

https://www.medicalnewstoday.com/articles/antibodies-fight-off-the-new-c...?
https://directorsblog.nih.gov/2020/07/28/immune-t-cells-may-offer-lastin...

Professor Tim Spector does an excellent job
Category: Blood tests

Replies: 6

Last updated: 6 November 2021
Rick B on 1 August 2021

Category: Uncategorised

Replies: 24

Last updated: 4 November 2021

Some Expertise Needed - TFR
by Rick B (Nov 4)

Thanks, Kat. My new onc is started me at 400 mg Imatinib, monitoring every 4 weeks for BCR-ABL and other blood test. Once I reach 0.1, she will back off to a less frequent monitoring. She says

by kat73 (Nov 4)

Rick - You must be SO disappointed. And now you have to start with a new person and all that entails. Listen, hang in there and hang onto your optimism. Try hard to make yourself

by Buzzm1 (Nov 2)

Rick, see if your new onc is amenable to restarting you on Imatinib 100mg. When CML is at a low level, which yours still is, a low TKI dosage will typically suffice in getting you back to

by Rick B (Nov 2)

Buzz, not good. My October 18th PCR test came back 0.4243, which actually is where it was just 4 months into treatment back in 2018. My hematologist has left to go join the Cleveland Clinic. I have
Category: Uncategorised

Replies: 24

Last updated: 4 November 2021
reginawagner on 28 October 2021

Category: Side effects

Replies: 7

Last updated: 4 November 2021

Pleural Effusion/Stoppage Time/Remission
by kat73 (Nov 4)

Regina - I've been at 20 mg for several years (sorry, I'm not where my files are right now - I think it's 3 or 4?) And yes, the idea for CMLers is to stay on a TKI for the rest of

by KingBurger (Oct 31)

Ok thanks. Not sure I’m noticing any other symptoms besides the cough. Will speak to the doc about an X-ray

by reginawagner (Oct 31)

Dry cough is one of the symptoms, but mine were just getting a bit winded when going for walks (not around the house but actual exercise walks) and going up stairs, and as it got slightly worse a

by KingBurger (Oct 31)

What were the symptoms you noticed for pleural effusion? I have been on 100mg sprycel now for 2 months and have developed a bit of a cough for the last few weeks. Could there be a connection?
Category: Side effects

Replies: 7

Last updated: 4 November 2021
johnw1001 on 22 October 2021

Category: Clinical trials

Replies: 6

Last updated: 3 November 2021

National Cancer Covid 19 Survey
by skiinglaketahoe (Nov 3)

Hi
Just to say that I received my results today. It was rather an anticlimax as all it says is that I have antibodies. No number or anything useful. I had my 3rd jab over a month ago. I am currently

by MarkP66 (Nov 2)

Hi John
I also registered for the survey and the kit arrived 10 days ago. I took the test the day before my 3rd primary jab. My second dose was on April the 14th this year having had the AZ Oxford

by johnw1001 (Oct 28)

Thanks Susan,
It would be interesting to post your results here when these come to you :also your vaccine status -that is what/when was your last jab and whether it was third primary dose etc

by skiinglaketahoe (Oct 28)

Hi
I got an 'invite' to register for the antibody test from Leukaemia Care. This was in the middle of September. I was interested to know my antibodies so duly registered. About 2 weeks ago
Category: Clinical trials

Replies: 6

Last updated: 3 November 2021
Kathyp on 31 October 2021

Category: Uncategorised

Replies: 1

Last updated: 2 November 2021

Small blisters on glivec
by sandy craine (Nov 2)

Kathy,
Are the blisters or the surrounding area sensitive to touch or painful? If so, this may well be shingles which can spread and can be to do with you/your immune system being under stress. Did

by Kathyp (Oct 31)

Does anyone get small blister type spots while on glivec, I had a rash on my face recently with blisters and the dr thought it was shingles.
the rash has reappeared tonight , anyone
Category: Uncategorised

Replies: 1

Last updated: 2 November 2021
Ontasigna on 1 November 2021

Category: Treating CML

Replies: 0

Last updated: 1 November 2021

Ayurvedic herb(kutki powder) with Nilotnib
by Ontasigna (Nov 1)

Hi All
Is it safe to consume ayurvedic herbs when on nilotinib( any interaction)??
Example: Kutki powder
Category: Treating CML

Replies: 0

Last updated: 1 November 2021
scuba on 29 October 2021

Category: Uncategorised

Replies: 0

Last updated: 29 October 2021

Covid
by scuba (Oct 29)

https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(21)00648-4/fulltext
https://www.bloomberg.com/news/articles/2021-10-28/getting-vaccinated-do...

I don't know how best to say
Category: Uncategorised

Replies: 0

Last updated: 29 October 2021
SarahR on 21 October 2021

Category: Organising your life

Replies: 4

Last updated: 29 October 2021

Referral
by David Fitz (Oct 29)

Hi there,
Your GP can make the referral if you find that it might be a more difficult conversation with your current haematologist.
David.

by AlexisHawthorneTZlq (Oct 26)

I think you just call there or write to the mail and take a referral to a doctor.

by SarahR (Oct 22)

Ok thanks. I'll ask her...I just wasn't too sure whether it's my GP I ask .
Thanks for the reply

by Christine R (Oct 22)

Hi Sarah. Can you ask your local consultant about a referral? I am dealt with locally for prescribing Nilotinib and normal blood tests but i go to a centre of clinical excellence every 6
Category: Organising your life

Replies: 4

Last updated: 29 October 2021
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