You are here

Forum

David Fitz on 17 June 2024

Category: Getting help

Replies: 0

Last updated: 17 June 2024

UK CML Patient Day - your input needed!
by David Fitz (Jun 17)

PLEASE COMPLETE THIS SHORT SURVEY. IT TAKES JUST A COUPLE OF MINUTES.
We are assessing the feasibility of running a UK CML Patient Day sometime in 2025, and need your input to help us plan this
Category: Getting help

Replies: 0

Last updated: 17 June 2024
Fatty Fish on 23 April 2024

Category: Organising your life

Replies: 8

Last updated: 12 June 2024

Living with CML
by Suboptimal_ (Jun 12)

Hi Fatty Fish, I just watched your video. PPMS on top of CML - I can hardly believe how unlucky you’ve been. Especially with such extreme cramping, I don’t know if I could have stuck through that as

by Suboptimal_ (Jun 12)

(Duplicate post)

by hannibellemo (Apr 30)

Thanks, Buzz! As you know, my CML raised its ugly head fairly quickly whenever I had to stop due to pleural effusion on Sprycel. I can't say I'm particularly hopeful, but I will never know if I don'

by Fatty Fish (Apr 28)

Hi Pat,
I'm glad you enjoyed the CML video and the others, hopefully.

I'm due to have my blood tested again soon for the CML. Currently, my white blood cell count is still just above the
Category: Organising your life

Replies: 8

Last updated: 12 June 2024
Suboptimal_ on 6 June 2024

Category: Side effects

Replies: 3

Last updated: 12 June 2024

Bladder irritation/infection with TKIs?
by Suboptimal_ (Jun 12)

Thanks for the response - what a great feature!

by Nimbus2 (Jun 12)

Duplicated entry deleted.

by Nimbus2 (Jun 12)

Try the free asktheexpert service, see:
https://cmlsupport.org.uk/asktheexpert
I recently asked about urinary retention and got an almost immediate response from a professor.

by Suboptimal_ (Jun 6)

Hi all,
I was diagnosed with chronic phase Ph+ CML a few weeks ago. I’ve only been on imatinib for less than a week, but am now experiencing a flare-up of a chronic UTI that was very much under
Category: Side effects

Replies: 3

Last updated: 12 June 2024
David787 on 3 June 2024

Category: Children & young people

Replies: 7

Last updated: 12 June 2024

Undetectable
by Buzzm1 (Jun 12)

David787, after one year of undetected, if your onc/hema has not begun to reduce your dosage, you might want to begin to gradually reduce your dosage on your own. Taking a whole Imatinib 400mg

by David787 (Jun 4)

Many thanks indeed for the very useful reply Alistair. I shall watch the video and read your post on your battle. Good to know that you are now stable on 200 mg. Something to strive for!
I have been

by David787 (Jun 4)

Thanks for your reply; most interesting. I have been on Imatinib for nearly for years now.
Hopefully they will reduce my dose soon.
David

by David787 (Jun 4)

Hello Fitz,
Many thanks for your reply. I have been on the Imatinib for nearly 4 years now.
David
Category: Children & young people

Replies: 7

Last updated: 12 June 2024
Taper11 on 17 October 2023

Category: Treating CML

Replies: 12

Last updated: 2 June 2024

When to switch to asciminib
by 3oK@ (Jun 2)

It seems that more serious side effects of Asciminib are expected at 200-400 mg pd which is used for T315I mutation, while the standard dose for cp is 80 mg pd.
https://www.ncbi.nlm.nih.gov/pmc/

by 3oK@ (May 24)

Hi and thanks for sharing the dose info and good news. I’m seeing my doc in June and will ask him to switch as I don’t tolerate Nilotinib well, started experiencing heart racing and thumping after

by healthyhabits (May 23)

Thank you! Doing a little jig!

by David Fitz (May 23)

That’s fantastic! You must celebrate.
David.
Category: Treating CML

Replies: 12

Last updated: 2 June 2024
alexmcpee on 3 May 2024

Category: Blood tests

Replies: 5

Last updated: 30 May 2024

Latest BCR results
by Roza (May 30)

Thanks for sharing Alex and it's great news. Stress eats into our immune system and it's not something we deal with well, particularly in Western society. For those of us who are in a slower

by kat73 (May 27)

I couldn't agree with you more, on all your well-made points and observations. I took that long to get to where you are. Over the years I've wondered many times "why?" I feel it was stress (of

by sue. R (May 7)

I am so glad you mention the mental bit. This treatment has gotten me real depress I think, since I take two pills in the morning and I get nauseous and headache all I can do is sleep. Yet I am

by alexmcpee (May 4)

Hi Sue, thank you yes just above the detection line but very very happy with such a large drop.
Plateaus are very common 2.5 years to get to 0.1 for me. It took 1.5 years to go from about where you
Category: Blood tests

Replies: 5

Last updated: 30 May 2024
MartinZA on 25 January 2024

Category: Treating CML

Replies: 14

Last updated: 28 May 2024

Latest update on my TFR attempt
by David Fitz (May 28)

Asciminib does seem quite promising, and there are high hopes for it. But remember, there were very high hopes for ponatinib too and there are very good reasons we don’t see that many patients

by kat73 (May 27)

This is all great news, Martin! I'm getting antsy to try asciminib, myself. If I could find someone to tell me it makes the puffy eyes go away, I'd be there in a shot.

by MartinZA (May 21)

Thanks so much Buzz, and for all the help and advice along the way. Your experience has been incredibly valuable!

by MartinZA (May 21)

Forgot to mention that, if I have to restart some day, it will definitely be asciminib. According to my doctor it shows a lot of success with minimal side effects.
Category: Treating CML

Replies: 14

Last updated: 28 May 2024
johnw1001 on 5 March 2024

Category: Side effects

Replies: 19

Last updated: 26 May 2024

Long term effects of tki's
by Buzzm1 (May 26)

Sage, six months on the alternating dosage is sufficient. The interim step isn't needed.
Just for the record, when did you reduce to Sprycel 50mg, then to 40mg, and then when did you begin the

by SageH (May 26)

What do you consider a long period of time? Do you think 6 months is sufficient? I was diagnosed in 6/2021 and was put on 100 mg of Sprycel. My doctor reduced me to 50 mg, and then after much

by Buzzm1 (May 25)

Sage, I just came across your post. If you have been undetected on the alternating dosage for a period of time, don't hesitate to further reduce your dosage to Sprycel 20mg.
Buzz

by SageH (May 18)

Buzz -
Thank you for this note. I am of the same mindset. I gradually started reducing my Sprycel dosage and am now taking 20 mg on day, and 40 mgs the next. I remain undetected, and am now
Category: Side effects

Replies: 19

Last updated: 26 May 2024
cmljax on 11 May 2024

Category: Other conditions

Replies: 4

Last updated: 18 May 2024

GERD and Sprycel
by SageH (May 18)

One thing that seemed to help me a lot was raising the top side of my bed by about 4", so my head is elevated when I sleep. It is barely noticeable to look at the bed and you don't really notice it

by David Fitz (May 11)

I’m really not sure on availability. Best to ask your pharmacist I guess. It’s quite a niche product.
My GERD symptoms were present before I had CML. Reflux mainly, which was managed with PPIs, but

by cmljax (May 11)

David:

Thanks for all the info. There's a lot for me to investigate. Just a couple of follow up questions:

1. Were your Gerd symptoms like mine - I have very little heartburn. Mostly

by David Fitz (May 11)

Hi there,
I had your exact situation some years ago. I solved it surgically, with a procedure called a Nissen fundoplication. It totally solved my issue and I have never had any recurrence of GERD
Category: Other conditions

Replies: 4

Last updated: 18 May 2024
RN on 14 May 2024

Category: Blood tests

Replies: 5

Last updated: 15 May 2024

Bouncing around MMR
by RN (May 15)

Thank you Kamil and Alex. Appreciate your help. This definitely helps my mental state a lot.

by alexmcpee (May 15)

You’re totally fine. I and many of us (especially the younger folk) seem to bounce around that area. I did for 2.5 years before reaching 0.07 MMR.
It only affects your mental state and nothing more

by Kamil (May 15)

Hello,

We are at a similar position, diagnosed 2 years ago. Lowest reading was 3 months ago at 21st month mark at 0.011, and the latest result bounce back to 0.069.
Similarly to you, we

by RN (May 14)

Thank you Buzz!! Feel much better now.
Category: Blood tests

Replies: 5

Last updated: 15 May 2024
k.Tam on 23 April 2024

Category: Blood tests

Replies: 23

Last updated: 11 May 2024

About Treatment Free
by scuba (May 11)

The solution to cancer lies in genetics of our immune system. Cancer occurrence is an immune system failure.

We like to think of ourselves as 'machines' with parts breaking and in need of

by JoeP (May 11)

Allistair’s video is awesome. I especially like the visual presented that MR4 is similar to less than a grain of sand.
I do want to amend my response to what Scuba said about the immune system

by vlacer (May 9)

Alastair,

Thanks, great video!!

by JoeP (May 9)

My previous onco once referred to CML as a stupid cancer. His logic being that CML only has one genetic aberration. The acute forms are much more complicated and can involve lots of different
Category: Blood tests

Replies: 23

Last updated: 11 May 2024
scuba on 26 April 2024

Category: Uncategorised

Replies: 2

Last updated: 7 May 2024

Vitamin D regulates microbiome-dependent cancer immunity
by scuba (May 7)

I take 5,000 IU's per day in summer and 7500 (5/10 alternating days) in winter. This protocol barely keeps my vitamin D level near 70 ng/ml which is the "sweet" spot for maximum benefit (in regard

by hannibellemo (Apr 30)

Scuba, I've never had my D levels checked, but I have taken a supplement ever since dx on the recommendation of my original hem/onc. I think he recommended 1,000 IU daily and based on my theory of "

by scuba (Apr 26)

Just published study reinforces the connection between adequate vitamin D levels and anti-cancer properties
https://www.science.org/doi/10.1126/science.adh7954
Vitamin D regulates microbiome-
Category: Uncategorised

Replies: 2

Last updated: 7 May 2024
Gian P on 1 May 2024

Category: Blood tests

Replies: 3

Last updated: 2 May 2024

CBR Up and Down! Very Frustrating...
by Gian P (May 2)

Thank you Pat,

i finally spoke to my Doctor and she also told me that in the scheme of things my test is not bad, could be better but at this point we have to continue monitoring the results,

by hannibellemo (May 2)

Hi, Gian! You started on 800mg Gleevec and your platelets dropped - I'm not surprised, that often happens in the beginning and generally the dosage is dropped (or Gleevec held) until the platelets

by hannibellemo (May 2)

Hi, Gian! You started on 800mg Gleevec and your platelets dropped - I'm not surprised, that often happens in the beginning and generally the dosage is dropped (or Gleevec held) until the platelets

by hannibellemo (May 2)

Hi, Gian! You started on 800mg Gleevec and your platelets dropped - I'm not surprised, that often happens in the beginning and generally the dosage is dropped (or Gleevec held) until the platelets
Category: Blood tests

Replies: 3

Last updated: 2 May 2024
Tomeocat on 10 January 2024

Category: Treating CML

Replies: 20

Last updated: 1 May 2024

Specialist in CML + cramps
by sue. R (May 1)

I was first given Spyrcel, hat worked fine and I even was undetected but when the dose was lowered due to Pleural effusion it was detected. Then it was on low dose Bosutinib which was great but

by Tomeocat (May 1)

Hi Sue,

the nausea is what i am worry about. I had it for more than 4 months with the imatinib and I am worry it will be the same with this other drug.

Did you have any side effects when

by sue. R (May 1)

I am now on Nilotinib 400 mg, it been a month now. Terrible headache, nausea and itch.

I was switch from Spyrcel in 2021 due to pleural infusion, to Bosutinib but that affected my liver and

by AlastairC (May 1)

Hi Francesca,
In the very early days (around 2008) I had got to BCR ABL around 0.6% but was very neutropaenic on 400mg Imatinib, so I went to 200mg per day. The BCR ABL level stayed the same for 6
Category: Treating CML

Replies: 20

Last updated: 1 May 2024
Dupont on 29 April 2024

Category: Uncategorised

Replies: 1

Last updated: 1 May 2024

Tasigna/Nilotinib to Sprycel/Dasatinib switch ?
by sue. R (May 1)

I switched from Spyrcel to Nilotinib as the Spyrcel was causing pleural infusion. In between I was taking Bosutinib for a year but I too had an upward trend.

A month now on 400 morning and

by Dupont (Apr 29)

Hello,
I was diagnosed with CML in May 2022 and on tasigna/nilotinib ever since. Lately, my PCR results have been stagnating with a slight upwards trend (0.22 in July 23, 0.25 in November 23 and 0.
Category: Uncategorised

Replies: 1

Last updated: 1 May 2024
johnw1001 on 5 April 2024

Category: Other conditions

Replies: 6

Last updated: 25 April 2024

Covid booster jabs in England-April 2024
by johnw1001 (Apr 25)

Just an update -apparently spring booster being offered is Moderna I believe not Pfizer
I have had many invitations from NHS via app etc and GP as well
Took GP offer yesterday -sore arm especially

by David787 (Apr 25)

I did eventually get the invitation; think I was being a little impatient! Vaccination yesterday, sore arm today!
David

by David Fitz (Apr 15)

I got an email invitation to book my spring vaccine this afternoon.
David.

by AlastairC (Apr 15)

Just looked up what Wales is doing on this. It is being rolled out by the Health Boards, as has hapened previously. They will contact people who need these jabs between now and the end of June with
Category: Other conditions

Replies: 6

Last updated: 25 April 2024
LucyandMark on 21 November 2018

Category: Uncategorised

Replies: 3

Last updated: 24 April 2024

CT scan – ok with CML or to be avoided?
by scuba (Apr 24)

Some additional information:
https://cllsociety.org/2021/09/the-cumulative-risk-of-multiple-ct-scans-...
Prior to my CML diagnosis, I had a series of CT-scans for an abdomen issue (non-cancer).

by Santa (Apr 24)

As someone who has referral from haematologist to abdominal CT scan in order to clarify location of possible gallstone/polyp in gallbladder (which causes symptoms such as occasional right side

by David Fitz (Nov 21)

Hi Lucy,
Your husband has nothing more to worry about having a CT scan as a CML patient than one when he didn’t have CML.
A CML patient is at no more risk than anyone else from a CT scan. A CT

by LucyandMark (Nov 21)

Hi all. Apologies if this has been discussed before.
My husband has been a year on imatinib. He's had abdominal pain which comes and goes, but which can be very uncomfortable. Tomorrow he's due to
Category: Uncategorised

Replies: 3

Last updated: 24 April 2024
scuba on 16 April 2024

Category: Uncategorised

Replies: 1

Last updated: 22 April 2024

Sprycel (dasatinib) Interactions
by Dustylloyd (Apr 22)

Hi Skuba,
I’ve been on Nilotinib for the last 9 years, about 4 years ago I was put on a statin drug due to high blood pressure readings, at my Cml consultations my doctor, thankfully, tells me

by scuba (Apr 16)

https://www.medicalnewstoday.com/articles/drugs-sprycel-interactions
Updated information. Keep in mind sprycel's half-life in the body is about 5 hours. So if any of the drugs on the list must be
Category: Uncategorised

Replies: 1

Last updated: 22 April 2024
johnw1001 on 19 April 2024

Category: Side effects

Replies: 1

Last updated: 19 April 2024

Side effects of imatinib-musculo -skeletal issues
by JoeP (Apr 19)

JohnW I can’t speak to bone density as I haven’t been tested recently, however, I can attest to the annoying bone pain side effects of Imatinib. Have you reached CMR on Imatinib? I never did. Have

by johnw1001 (Apr 19)

Hi All,

Having been on imatinib for 17 years I suffer especially at night muscular cramps and bone pains which is a normal side effect of the drug.Not a lot has been written about this issue
Category: Side effects

Replies: 1

Last updated: 19 April 2024
Danmason11 on 15 April 2024

Category: Uncategorised

Replies: 3

Last updated: 19 April 2024

Son has chicken pox…
by johnw1001 (Apr 19)

Hi

It is fairly normal for children to have chicken pox at a younger age and the benefit is that after having been exposed to it they then will not develop it later in life as then it can be

by Danmason11 (Apr 16)

Thanks Scuba, really helpful. I did wonder if I’d already missed the boat in terms of being ‘exposed’!, but alas his spots seem to have reduced overnight so we may have gotten lucky!

by scuba (Apr 15)

Shingles is a painful rash that occurs when the dormant chickenpox virus is reactivated, typically due to a weakened T-cell based immune system or other triggering factors

Shingles is not

by Danmason11 (Apr 15)

Hi all
I was just wondering if there is any advice on what to do when a family member (in my case my 3 year old son) has chicken pox? I’ve done a search on here with nothing conclusive in terms of
Category: Uncategorised

Replies: 3

Last updated: 19 April 2024