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YianniA on 29 September 2021

Category: Side effects

Replies: 2

Last updated: 30 September 2021

Any lymph node issues after taking vaccine as a COVID patient
by YianniA (Sep 30)

Thank you very much for the detailed response. I was diagnosed 5 years ago and have done well. Besides the typical side effects of Dasatinib/Sprycel. Yes I am happy my BCR is down to <0.002

by johnw1001 (Sep 30)

Hi,
You dont say how long ago you were dx with CML.
I had this same problem a few years into treatment for CML and was on imatinib 400 mg and was probably a similar situation to yours .I was

by YianniA (Sep 29)

About one month after taking the JNJ vaccine (March27th), I noticed some tightness on the side of my neck and in the front left side. After a scan we saw lymph nodes were larger which led to a small
Category: Side effects

Replies: 2

Last updated: 30 September 2021
ishb1 on 28 April 2021

Category: Blood tests

Replies: 2

Last updated: 29 September 2021

Rising Level of Bilirubin
by JPD (Sep 29)

Ive had bilirubin 1.6 before and my Onc has said not to worry about it in the slightest. Im assuming your other liver panels are within normal range? If so, I wouldnt sweat it at all. Worry

by johnw1001 (Sep 26)

Hi,
I have had some liver issues (certain scores) recently after long term use of imatinib but my Bilirubin is normal. My consultant told me that it is not unusual in the early stages of taking a

by ishb1 (Apr 28)

I am currently on Imatinib 400 MG, diagnosed back in October of 2020. Noticed my bilirubin has been slowly rising the last few weeks. Has any one else had this happen? I read that intense exercise
Category: Blood tests

Replies: 2

Last updated: 29 September 2021
Mick E on 1 September 2021

Category: Uncategorised

Replies: 10

Last updated: 28 September 2021

Insulin resistance
by Mick E (Sep 28)

I’ve had an hba1c test which I queried as it does not specifically check for high insulin levels. The test came back as normal glucose levels, but from what I’ve read

by Mick E (Sep 17)

Thanks Sandy I will have a look at information sheets on those drugs.
I speak to specialist in 3 weeks so hopefully it will give me time to get a clearer picture of what’s happening.

by sandy craine (Sep 17)

Hi Mick,
OK, so hyper (too much). Scuba makes some good suggestions re exercise and low carb diet for weight loss etc. but that may not be an issue for you? If you did not have this problem before

by Mick E (Sep 17)

Thanks for the detailed reply Scuba! 😊
I do a lot of exercise (within my limits) and constantly monitor recovery levels to ensure I don’t overdue things. Did my first 24 hour fast last
Category: Uncategorised

Replies: 10

Last updated: 28 September 2021
SS86 on 26 September 2021

Category: Side effects

Replies: 6

Last updated: 28 September 2021

Skin Rashes/ allergy - is it a side effect of dasatinib
by Felix (Sep 28)

Hi, that sounds good to me ,certainly don't need to be on 100 mg with that result .Press for a gradual dose reduction to 50 mg then 20 mg .As a 5'3" woman I refused to go on 100

by SS86 (Sep 28)

Hi Denise,
it was .0098 last time however the one done recently is yet to come
Thanks

by Felix (Sep 27)

Hi, if your results are good then you need a dose reduction by the sound of it ,it's your body telling you 100 mg is too toxic .What is your latest BCR ABL. Denise.

by SS86 (Sep 27)

Hi All,
Our hematologists have advised to stop dasatinib 100 mg dose for 3 days to evaluate if the skin rashes are due to dasatinib.
The results on Dasatnib 100 mg were good so far and if this needs
Category: Side effects

Replies: 6

Last updated: 28 September 2021
EvaH on 24 September 2021

Category: Treating CML

Replies: 5

Last updated: 26 September 2021

Dose Reduction- My Hematologists reaction
by sandy craine (Sep 26)

Hi Eva, not sure I agree with the age thing. Prof.Richard Clarke - the lead investigator of the DESTINY trial is now retired.
There is certainly a divide between those clinicians/researchers who

by EvaH (Sep 26)

Thanks for the comments, very helpful.
And yes my current hematologist is ancient. Past retirement in Europe most likely.

by Christine R (Sep 25)

Hi Eva

I think haematologists do fall into the 2 camps of either dose reduction or all or nothing. I asked my local haematologist about a possible dose reduction and his view was that i was

by Buzzm1 (Sep 24)

EvaH, by first reducing your dosage prior to any TFR attempt, should you fail TFR you can restart on a very low TKI dosage (Imatinib 100mg), rather than the full TKI dosage (Imatinib 400mg) that
Category: Treating CML

Replies: 5

Last updated: 26 September 2021
Nonkuthalo on 22 September 2021

Category: Blood tests

Replies: 2

Last updated: 23 September 2021

Can you be pregnant while living with CML
by Nonkuthalo (Sep 23)

Thank you very much for your answer. I'm really relieved to hear that.

by scuba (Sep 22)

Yes.
Once your CML is under control (and it will), you can expect to have a family one day.

by Nonkuthalo (Sep 22)

Hello

My name is Nonkuthalo and I am 27 years old, I have been diagnosed with cml earlier this year and I was wondering if I will ever be able to have my own children one day?
Category: Blood tests

Replies: 2

Last updated: 23 September 2021
Rory on 10 September 2021

Category: Treating CML

Replies: 5

Last updated: 22 September 2021

PCR Increase of 2800% following MMR4 - on Dasatanib
by Rory (Sep 22)

Thanks so much for your response and support. I shall see what tomorrow’s blood test reveals! I had a two week bout of terrible toothache in last period ending with root canal surgery and was

by thomas.c (Sep 21)

I had multiple 10x blips during my dasatinib treatment in the past 4 years, eventually they went back to normal. But i feel your pain, it is certainly extremely stressful to experience something

by Rory (Sep 10)

Guys - thanks so much for this input. I’ve no idea what size of magnitude you can see in outruns or downturns but of course am a bit sceptical about such a seemingly massive increase.

by scuba (Sep 10)

Rory - I would ask for an immediate re-test. It is quite possible the results are due to lab error (it happens), but if it is not, you do not want to wait two months to confirm a dramatic upward
Category: Treating CML

Replies: 5

Last updated: 22 September 2021
Reilly9108 on 30 May 2021

Category: Uncategorised

Replies: 2

Last updated: 21 September 2021

Sprycel
by Reilly9108 (Sep 21)

Thank you for response
I had total hysterectomy so no ovaries left
ca125 still climbing & drs not concern guess just have to wait till something presents itself

by thomas.c (Sep 20)

Before you think of the worst a simple ovarian cyst can blow up your CA 125, which is very common. And i wouldn’t exclude tki causing that (but ofcourse i’m not a dr so my opinion is

by Reilly9108 (May 30)

Does Sprycel have an effect on CAT 125 test results
Category: Uncategorised

Replies: 2

Last updated: 21 September 2021
MarkP66 on 16 September 2021

Category: Uncategorised

Replies: 5

Last updated: 20 September 2021

Where to buy Vitamin D tablets over 4000iu
by johnw1001 (Sep 20)

If in UK try Holland Barrett online who do 3000 IU tablets(take 2 for 6000 IU etc) -buy one get one half price and then 20 % off if order over £25;Also available as order once and then

by MarkP66 (Sep 17)

Thanks Sandy

by MarkP66 (Sep 17)

Thanks David

by sandy craine (Sep 17)

I buy mine from Amazon but there are others, just search high dose D3 ... https://www.lifeextensioneurope.co.uk/vitamins/vitamin-d/
Sandy
Category: Uncategorised

Replies: 5

Last updated: 20 September 2021
Taper11 on 11 September 2021

Category: Uncategorised

Replies: 7

Last updated: 20 September 2021

Rib/Spleen Discomfort - Dasatinib
by Taper11 (Sep 20)

Davide & Evah,

Thanks for the replies.

I had an appointment and my WBC is in the normal range. I've had a good hematologic response to dasatinib.
Knowing that, my ache is probably 5

by Taper11 (Sep 20)

Thanks Richard - you're a tough guy battling this for so many years. Your good news definitely outweighs the bad!

by davewell (Sep 20)

Hey,
I don't want to alarm you but if I were you I would make sure it is not pleural effusion; I had that when taking Dasatinib and I found out precisely because I felt a small abdominal pain in

by EvaH (Sep 20)

Hydroxyurea is quite a powerful/heavy drug. Im sensitive to my body at normal times but while on it (3-4 weeks) I became even more soa and this continued till my blood parameters were back to normal
Category: Uncategorised

Replies: 7

Last updated: 20 September 2021
KingBurger on 27 August 2021

Category: Blood tests

Replies: 5

Last updated: 18 September 2021

Sprycel
by KingBurger (Sep 18)

Thanks for checking in. I seem to be doing well. I take the Sprycel each morning and the headaches and nausea have all dissipated. The only thing I do notice at times is a rapid and strong heartbeat

by Krissi0913 (Sep 18)

Hi! I take 100 mg Sprycel. My only suggestion is to take it in the evening. Sprycel tends to some fatigue and brain fog for me, so if I take it at 10 pm, I am just sleeping through it.

by Felix (Sep 3)

Hi Kingburger,just checking to see how you are feeling on your new meds .Headaches in the morning? Hope you are feeling ok ,Regards .

by KingBurger (Aug 28)

Thanks Felix for the response. I had this discussion with the CML specialist when he made the change ask if I could take 50mg instead. I lost the debate- his rationale was since I was resistant to
Category: Blood tests

Replies: 5

Last updated: 18 September 2021
sandy craine on 28 August 2021

Category: Other conditions

Replies: 10

Last updated: 17 September 2021

vitamin D and melatonin, and how they may help with COVID-19.
by scuba (Sep 17)

If you are going to take 12,000 IU's weekly, best to spread it out during the week (2,000 IU's per day) rather than taking at one time on one day. Any level much above 10,000 per day is not

by sbp03 (Sep 17)

Thanks Scuba, her vitamin D is in its 40s, she really tests twice a year and supplement with 12.000 IU weekly. Our concern was related to an eventual complication in her chronic portal vein

by scuba (Sep 8)

You can absolutely take vitamin D without K2, but just need to be aware of dose and D base level. Vitamin K2 is a sort of safety valve for D. Take in too much D and the k2 helps mop it up. I did

by sbp03 (Sep 7)

Hi Scuba, would it be of concern on taking vitamin D without K2 as my wife is also taking warfarin (vitamin k antagonist) and her doctor advised it against vka and K2 interaction, but not against
Category: Other conditions

Replies: 10

Last updated: 17 September 2021
Zzyzxuk on 12 October 2020

Category: Uncategorised

Replies: 14

Last updated: 16 September 2021

Just found out... :(
by jonnie turpie (Sep 16)

It has worked! Your diary has been sent using the envelope messaging function. I see it is very extensive with a great title: A High Powered Mutant of My Own Making
I will begin reading

by jonnie turpie (Sep 16)

OK Thanks.

I have send a message using the envelope icon.

by AlastairC (Sep 15)

The forum does have private messaging - see the envelope icon on the right hand side of the ribbon at the top of the page.

by EvaH (Sep 15)

Sure.
I somehow thought this forum had private messages but seems not...
Category: Uncategorised

Replies: 14

Last updated: 16 September 2021
JacqJohn on 11 September 2021

Category: Side effects

Replies: 11

Last updated: 15 September 2021

CML & Imatinib - frequent burst of blood vessel in the eye
by AlastairC (Sep 15)

When I was on 400 mg imatinib I used to have one or two eye bleeds per year. When I reduced to 200mg the bleeds stopped, and other side effects (cramps, bastric issues) were much reduced.

by JacqJohn (Sep 14)

Hi Buzz,
thanks for the feedback. I’ll talk to my hematologist and see… thank you again !~

by Buzzm1 (Sep 13)

JacqJohn, in an effort to eliminate your eye issue, it would be worth trying to have your onc reduce your dosage down to 300mg. You are far enough below CCyR, 1.0, that it shouldn't be a

by EvaH (Sep 13)

Ahh ok, very different to my experience.

I think imatanib is only known for bleeds into the eyeball (which are not visible) but I'm not sure.
Category: Side effects

Replies: 11

Last updated: 15 September 2021
vonnie on 12 September 2021

Category: Uncategorised

Replies: 2

Last updated: 12 September 2021

Abdominal cramps
by vonnie (Sep 12)

Hi John, thank you for your prompt and informative reply.. Regarding your IBS query. I was diagnosed with IBS in 2012 and initially was given mebeverine, an antispasmodic to help with muscle

by johnw1001 (Sep 12)

Hi Bonnie,
You dont say which tki you are on .I have been on imatinib for 15 years and have always found that it leads to rapid bowel movements and this is a common side effect.Looking at the list

by vonnie (Sep 12)

Hi all. I would very much appreciate advice regarding a problem I currently have As well as my CML I have been diagnosed with IBS some years ago. I have over the past month been suffering with
Category: Uncategorised

Replies: 2

Last updated: 12 September 2021
ruddoug09 on 9 September 2021

Category: Food & fitness

Replies: 3

Last updated: 12 September 2021

Fueling exeercise
by sorin real (Sep 12)

Actually, I think I have the same problem. I'm on Tasigna myself , 600mg/day and lately after taking 6 grams/day of L-Glutamine for my IBS, my BCR-ABL has increased from 0.115 to 0.872.
I

by snowman 35 (Sep 9)

Hi!

I work-out too. I do crossfit so my muscles are often very sore and tired. I feel the need too take supplements too help me but my doc told it is better not to take protein, creatine etc

by snowman 35 (Sep 9)

Hi!

I work-out too. I do crossfit so my muscles are often very sore and tired. I feel the need too take supplements too help me but my doc told it is better not to take protein, creatine etc

by ruddoug09 (Sep 9)

Hi all
Ages since I've posted on here but i'm after a bit of advice that I'm struggling to get information on elsewhere. I've read a few threads on here but only picks out
Category: Food & fitness

Replies: 3

Last updated: 12 September 2021
Damian Gabilondo on 9 September 2021

Category: Uncategorised

Replies: 5

Last updated: 10 September 2021

Tasigna - Curcuma ?
by scuba (Sep 10)

Hi Damian,
"what the Doctor told me at some point was that if I take my medication wrong, it could generate some type of resistance or mutation".
Your doctor is min-informed.

by Damian Gabilondo (Sep 9)

Thank you very much, your knowledge helps, what the Doctor told me at some point was that if I take my medication wrong, it could generate some type of resistance or mutation, from the beginning he

by scuba (Sep 9)

I now take "curcumin" in all kinds of forms. The medical part are as capsules (2 grams per day) C3 complex Curcumin with bioperine (pepper). But I also now take Turmeric root (ground as a

by Damian Gabilondo (Sep 9)

Thanks for the answer SCUBA you are a great reference, in what way do you recommend me to consume turmeric? capsules - root? . My doctor does not agree with the reduction very much but if with TFR,
Category: Uncategorised

Replies: 5

Last updated: 10 September 2021
Tanya Cuffe on 7 September 2021

Category: Uncategorised

Replies: 6

Last updated: 8 September 2021

Should I attempt TFR?
by Tanya Cuffe (Sep 8)

Thank you and all the best!

by EvaH (Sep 8)

MMR since feb 2017

Dose reduction started July 2021
Just had my first test a few weeks ago, still undectable. Id have done it sooner but my docs were not keen and covid times weren't conducive

by Tanya Cuffe (Sep 8)

Thank you Alistair I will take a look

by AlastairC (Sep 8)

Tanya, it might be useful to look at this video from the CML SG Patient day 2 years ago. The title is "Reducing or stopping treatment - who and when?" Yes it is two years old, and some
Category: Uncategorised

Replies: 6

Last updated: 8 September 2021
Kathyp on 5 September 2021

Category: Uncategorised

Replies: 2

Last updated: 8 September 2021

Anxious with dose reduction
by chrissie (Sep 8)

I have been on 300mgs for several years now and reached 0.000% on this dosage for the first time - and am holding it 15months later. I have tried 200mgs twice - but both times my PCRs started rising

by Kathyp (Sep 8)

Thank you John that was really helpful, I hope your doing well

by johnw1001 (Sep 8)

Hi,
After 15 years I had to discontinue for 14 weeks back in November 2019 and then continued again as soon as I lost MMR. Before the event my consultant told me that if I lost MMR then

by Kathyp (Sep 5)

Hi all , just started my glivec dose reduction , just doing it a 100 mg at a time but I’m feeling so anxious about it, it’s been my safety net for the last 18 years ,do you guys feel the
Category: Uncategorised

Replies: 2

Last updated: 8 September 2021
Christine R on 7 September 2021

Category: Uncategorised

Replies: 5

Last updated: 7 September 2021

Breast/prostate cancer link to Leuakaemia
by johnw1001 (Sep 7)

On a very general level if one asks the question what causes CML there are no definitive answers except there seem to be three headings of types of influences-1.exposure to radiation,2 exposure to

by sandy craine (Sep 7)

Sorry I misunderstood your post. Alastair is right, there is a link from exposure to ionising radiation - including via radiotherapy for other cancers- and the development of Leukaemia (including

by AlastairC (Sep 7)

Christine have you had radiotherapy at any stage? There is a known link between high dose radiation and an increased risk of leukaemias, including CML. I believe the radiotherapy I had for a

by Christine R (Sep 7)

Thanks Sandy. I was intending on asking that in a couple of weeks when i have an appointment. I seem to be adding it to a long list.
I did ask if even if it was genetic was there anything they could
Category: Uncategorised

Replies: 5

Last updated: 7 September 2021