You are here

Forum

snowman 35 on 8 August 2022

Category: Blood tests

Replies: 15

Last updated: 5 November 2022

Tfr has begun
by Sunny (Nov 5)

Good idea to reduce. With dasatinib less seems to be more, and you also lower the threat of having pleural effusion, so go for it, and good luck.
pigeon

by snowman 35 (Nov 5)

Hi every one!After tfr fail (bcr abl 0.013)I returned to sprycel 70mg and one month later I am back to undetected!So my next step is to reduce my dose to 50mg....

by snowman 35 (Sep 20)

Hi all!

I just had a phonecall with my doc.I wanted to tell him if we could reduce dose 70mg to 50mg.

He didn't remember that the last 9 months before trying tfr I was taking 70mg and

by snowman 35 (Sep 18)

This exactly what I am planning to do Scuba!It is going to be difficult cause my doc is not a fun of reducing the dose.....

The only concern I have right now is if the pcr after one month in
Category: Blood tests

Replies: 15

Last updated: 5 November 2022
SS86 on 31 October 2022

Category: Side effects

Replies: 8

Last updated: 5 November 2022

Water Retention in Lungs
by SS86 (Nov 5)

Thank you so much, Scuba.

by scuba (Nov 4)

https://www.clinical-lymphoma-myeloma-leukemia.com/article/S2152-2650(16)30568-7/fulltext
https://ashpublications.org/blood/article/138/Supplement%201/3607/479750...
https://ashpublications.org/

by SS86 (Nov 4)

Scuba, Thanks for your reply. Your replies are always useful to all of us.
I have an appointment with the doctor but I am not sure if he will be convinced to a 20 mg dose on an alternate day.

by SS86 (Nov 4)

Thank you for the reply, Hannibellemo. I will try my best to convince the doc to 20 mg dose.
She was on 100 MG before ( for almost 8 months) before the skin rash hit her twice. The first time
Category: Side effects

Replies: 8

Last updated: 5 November 2022
myraebora22 on 4 November 2022

Category: Blood tests

Replies: 1

Last updated: 4 November 2022

CML
by hannibellemo (Nov 4)

Hi, myraebora22. Knowing your country would help tremendously in determining medication aid. 🙂 Imatinib does have a generic version now - something that might be helpful. Mark Cuban's Cost Plus

by myraebora22 (Nov 4)

Good day.
My husband is 50yrs old diagnosed CML Last January 2020.
His prescribed medicine and maintenance is Imatineb. It is very costly. I need help for his continuous medication .
Thank you.
Category: Blood tests

Replies: 1

Last updated: 4 November 2022
DawnD on 2 November 2022

Category: Uncategorised

Replies: 4

Last updated: 4 November 2022

My CML
by DawnD (Nov 4)

Thank you so much for the replies!

by hannibellemo (Nov 4)

Hi, Dawn, at our age (l'm 3 years older) I wouldn't have concerns about any cardiac function tests. I had EKGs every 3 months when I was on dasatinib and then nilotinib although now that I

by DawnD (Nov 3)

I have the PCR done every 4 months. Yes he is afraid I will relapse. Doesn’t make sense to me. I am gonna try the 20 mg just like you said for a year and see what happens. Do you think every 4

by RC Kirk (Nov 3)

With your undetected status, any of the options you listed seem reasonable.
You might try going down to 20mg/day for a year and if you're still undetected, go for TFR.
Is your hematologist
Category: Uncategorised

Replies: 4

Last updated: 4 November 2022
sandy craine on 12 October 2022

Category: About CML

Replies: 1

Last updated: 4 November 2022

24th John Goldman Conference on CML - Biological and clinical overview
by Rocky Mountain Gal (Nov 4)

I really appreciate you keeping us informed with these conferences! Was this conference recorded? Do you have a link to the recording?

by sandy craine (Oct 12)

Highlights of the 24th John Goldman Conference on CML - Biological and clinical overview
Join our two experts as they discuss key aspects of the scientific sessions, workshops, abstract
Category: About CML

Replies: 1

Last updated: 4 November 2022
Reilly9108 on 3 November 2022

Category: Uncategorised

Replies: 1

Last updated: 3 November 2022

CA125
by RC Kirk (Nov 3)

I don't know, but maybe this test is something like the PSA test, looking for levels of an antigen in the blood. My PSA numbers seem to go up and down. Sometimes they get a little

by Reilly9108 (Nov 3)

Anyone having this test taken experience numbers up and down?
For me it’s always up & down. Scans are done shows nothing. Maybe the test is so sensitive it elevates with the
Category: Uncategorised

Replies: 1

Last updated: 3 November 2022
cousineg2 on 2 November 2022

Category: About CML

Replies: -1

Last updated: 2 November 2022

Psychological Factors Affecting the Willingness to Accept a Possible Tyrosine Kinase Inhibitor Discontinuation i

Category: About CML

Replies: -1

Last updated: 2 November 2022
Rick B on 28 February 2019

Category: Uncategorised

Replies: 5

Last updated: 1 November 2022

CML/Imatinib and Rising PSA
by RC Kirk (Nov 1)

3.1 | Patient PSA levels and events
A CML patient with benign prostatic hyperplasia (BPH) and slightly
elevated PSA (4.60 ng/ml) received imatinib treatment for 7 years.
When he was 71

by RC Kirk (Nov 1)

Can Tyrosine Kinase Inhibitors for CML Affect PSA Titers Unrelated to Prostatic Disease?
By: Celeste L. Dixon
Posted: Monday, December 10, 2018
A chance astute observation led to work,

by Rick B (Mar 3)

Thanks for the responses.

by Bill Miller (Feb 28)

My dad was diagnosed with prostate cancer about 14 years ago. He had surgery and radiation and is now cancer free, but has a lot of side effects from the radiation. He was 61 at the time, I'm 48
Category: Uncategorised

Replies: 5

Last updated: 1 November 2022
Buzzm1 on 3 October 2022

Category: Uncategorised

Replies: 17

Last updated: 1 November 2022

Post your CML history and ask others to comment on it ... we all may learn something.
by Sunny (Nov 1)

Thank you Kathy, just as you said, we have to do what we feel is right for us, and we are all different. Like you, I feel that at this point in time it is not right for me to stop treatment.
My

by Kathyp (Nov 1)

Pigeon —-You have to do what’s right for you , it took me along time to reduce my dosage( glivec) but eventually I did, not completely I’m still in 200 mg .for my mental health I

by Gian P (Oct 26)

My oncologists in September 0.119 recommended to test again in October, 0.134 and i just got my results back, so I suspect a call tomorrow, i m not sure what she could say to do, but i am a bit

by Buzzm1 (Oct 26)

Gian, in that your CML level has increased rather substantially in September and October I wouldn't recommend that you reduce your dosage at this time. If your CML level continues to
Category: Uncategorised

Replies: 17

Last updated: 1 November 2022
Abs815 on 19 October 2022

Category: Organising your life

Replies: 6

Last updated: 31 October 2022

Rubbish care in UK
by Abs815 (Oct 31)

Yes exactly! I have zero problem with locum doctors especially when they are regular locums, but your experience sounds so similar to my husband's. We've had every single one of those issues you

by alexmcpee (Oct 31)

I can relate to this since my original cml expert retired and I’ve now had 3 doctors in 2 years. I do understand the NHS predicament but to be honest I’ve had a bit of a rubbish handling

by Abs815 (Oct 20)

Hi Peter, sorry to have caused offence. May I just clarify that I am incredibly grateful for the NHS and as an NHS healthcare professional myself I know first hand how valuable the care within the

by Abs815 (Oct 20)

Thank you, that's really helpful.
Category: Organising your life

Replies: 6

Last updated: 31 October 2022
cousineg2 on 31 October 2022

Category: Side effects

Replies: 0

Last updated: 31 October 2022

Skin rash and bumbs with bosutinib
by alexmcpee (Oct 31)

This is normal for a lot of TKIs. The rash will only go when you stop or reduce dose. It’s folliculitis caused by TKI there is another name for pink spots on your skin but I can’t
Category: Side effects

Replies: 0

Last updated: 31 October 2022
Rocky Mountain Gal on 20 September 2022

Category: Treating CML

Replies: 21

Last updated: 29 October 2022

Need support from my support group
by MartinZA (Oct 29)

Hi Rocky Mountain Gal
It was my private medical aid. Although both drugs are approved here, it is unusual for a patient to move "backwards" from dasatinib to imatinib. In fact

by Rocky Mountain Gal (Oct 27)

Oh Martin, 3 months?!? Was that the process where you live or neglect of your team? I really like my doctor, but I am so frustrated that my team has been negligent. On the one hand

by MartinZA (Oct 26)

Hi Rocky Mountain Gal
Sorry to hear about all of your frustrations getting onto the nilotinib! I remember it took me almost 3 months from when the decision was taken to switch me from

by Rocky Mountain Gal (Oct 21)

This is almost comical. almost. I called the doctors office today to follow up on my prescription change to nilotinib. Oh, sorry, they say. It didn't get ordered, they say. My
Category: Treating CML

Replies: 21

Last updated: 29 October 2022
Jay_b_ce on 20 October 2022

Category: Side effects

Replies: 2

Last updated: 21 October 2022

General Advice
by Jay_b_ce (Oct 21)

Thank you Scuba. I will look in to this 👍🏼

by scuba (Oct 21)

All TKI's, but especially imatinib can lead to magnesium deficiency. Supplementing with magnesium will usually solve this problem and do so within 24 hours. Consider taking 400 mg magnesium

by Jay_b_ce (Oct 20)

Hi All,
I've not posted in here since September 2020 when I was first diagnosed with CLM. Since then medication has been going well with just the odd blip that required me to have a short break
Category: Side effects

Replies: 2

Last updated: 21 October 2022
Reilly9108 on 21 October 2022

Category: Uncategorised

Replies: 0

Last updated: 21 October 2022

Ca125
by Reilly9108 (Oct 21)

Total hysterectomy still have ca125 increasing
Category: Uncategorised

Replies: 0

Last updated: 21 October 2022
MartinZA on 17 September 2022

Category: Side effects

Replies: 11

Last updated: 20 October 2022

Update on low blood count issue
by kat73 (Oct 20)

Terrific, Martin!

by ColoradoGuy (Oct 17)

Very good news. Just keep an eye on BCR/ABL and I hope it stays at this very low level.

by David Fitz (Oct 16)

💪
That’s fantastic Martin! Thanks for updating us all, and this is great to hear. I know you’ve been through quite a scare so you deserve a bit of good news.

by MartinZA (Oct 16)

Two months since stopping the imatinib and the latest results are: Platelets 188 (normal) WBC 4.43 (normal) Haemoglobin 12.6 (normal is 13) And BCR-ABL is unchanged at 0.003 during my enforced TFR
Category: Side effects

Replies: 11

Last updated: 20 October 2022
Victoria Parker on 7 March 2021

Category: Side effects

Replies: 10

Last updated: 20 October 2022

Severe skin rash on Bosutinib
by Victoria Parker (Oct 20)

Good news about the numbers - I’m almost there. I found the side effects hideous and felt bad for complaining about it! Mad isn’t it. You’ll get there though. There

by SC (Oct 19)

Thank you so much for getting back to me - I was diagnosed nearly 4 years ago and whilst my numbers are very good - I am at zero, the side effects have been intolerable. I have been off Bosutinib

by Victoria Parker (Oct 19)

Hi, how grim for you.
no I had to come off it as it was really toxic for me. I tried Dasatinib and that made whole face swell so eventually went back on to Imatinib and seem to be doing ok on

by SC (Oct 19)

Hi, I realise you posted a year ago but i wanted to ask whether you found something to help with the side effects of Bosutinib. I have just discontinued Bosutinib because of swelling of face,
Category: Side effects

Replies: 10

Last updated: 20 October 2022
cousineg2 on 19 October 2022

Category: Clinical trials

Replies: -1

Last updated: 19 October 2022

New Tyrosine Kinase Inhibitor ELVN-001

Category: Clinical trials

Replies: -1

Last updated: 19 October 2022
TL on 18 October 2022

Category: Side effects

Replies: 1

Last updated: 19 October 2022

TKI Withdrawl
by EvaH (Oct 19)

I was in imatanib for 5 years, started TKI last November and have been having similar pain/stiffness since March.
No inflammation markers in the blood so I've decided whatever is going on the pain/

by TL (Oct 18)

I was on Tasigna for about four yrs. During that time I had bone/muscle pain in my legs. I was told it was normal and one day when I went off the drug the pains would go away.
Two years ago I went
Category: Side effects

Replies: 1

Last updated: 19 October 2022
Tanya Cuffe on 13 October 2022

Category: Uncategorised

Replies: 4

Last updated: 14 October 2022

TFR or not?
by Tanya Cuffe (Oct 14)

If I’m brave enough I might be a naughty girl too! Well done my friend and good to hear from you x

by Felix (Oct 14)

Hiya,ime a naughty girl ,I reduced the dose myself, I have done all along and then told my Doc I had done it .I have taken advice from the experts off this forum because my Doc isn't a CML

by Tanya Cuffe (Oct 13)

Great hearing from you Denise! I don’t think my Haemotologist would want me do the spilt pill thing. Would like try 10mg first. Good idea;:) great to hear yr well and let’s stay in touch

by Felix (Oct 13)

Hi Tanya ,haven't heard from you for a while.I am the same as you just over 3 years undetectable and thinking of TFR after Christmas my 5 year anniversary .I reduced my dose of Dasatinib
Category: Uncategorised

Replies: 4

Last updated: 14 October 2022
scuba on 23 September 2022

Category: Uncategorised

Replies: 8

Last updated: 13 October 2022

Treatment Free Remission (TFR) Update
by Tanya Cuffe (Oct 13)

That’s awesome Scuba! Was wondering if you went TFR as last I heard from you,you were still considering, Am hoping do the same in March 2023,will be 3 years undetectable but still unsure

by mamodei (Sep 28)

Great news!

by Sunny (Sep 28)

Great news, Scuba! Thanks for the update, you really could not wish for better outcome.
My consultant suggested TFR, as I have been undetected for 3 yrs, (40 then 20 mg dasatinib), but to tell

by alexmcpee (Sep 26)

Absolutely fantastic news Scuba.
I used to say I had no interest in trying TFR however the longer I have CML under control the more confident I seem to get. Maybe one day.
All the best mate.
Al
Category: Uncategorised

Replies: 8

Last updated: 13 October 2022