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Lisalater35 on 1 August 2021

Category: Uncategorised

Replies: 5

Last updated: 3 August 2021

Question!
by FirefighterCML (Aug 3)

That is similar to what I experienced. About a week or two into treatment I became insanely hungry like when I was a teenager. It lasted for about 2-3 weeks and then began to taper back off to what

by sandy craine (Aug 3)

Hi Lisa,
You could also try eating smaller meals but more often throughout the day. This way you do not overload your stomach and it may help. Another way might be to change the kinds of foods you

by Ismo (Aug 2)

If you continue to feel bloated and lack appetite I should get advice from your Dr however I can easily relate to your description of feeling hungry all the time and putting on weight while taking

by Lisalater35 (Aug 2)

No, I try to eat breakfast, lunch, and dinner. I feel bloated after breakfast, and just am not hungry all day.
Category: Uncategorised

Replies: 5

Last updated: 3 August 2021
Lisalater35 on 1 August 2021

Category: Uncategorised

Replies: 1

Last updated: 3 August 2021

Question!
by FirefighterCML (Aug 3)

That is similar to what I experienced. About a week or two into treatment I became insanely hungry like when I was a teenager. It lasted for about 2-3 weeks and then began to taper back off to what

by Lisalater35 (Aug 1)

So in the beginning of my so called CML journey I was put Imatinib 400 mg. I was so hungry gained 15 pounds uggg. Now I eat once a day, and can’t eat anymore! Is this normal?
Category: Uncategorised

Replies: 1

Last updated: 3 August 2021
annie63 on 6 July 2021

Category: Uncategorised

Replies: 10

Last updated: 2 August 2021

BCR-ABL 39% @ 2 months since diagnosis
by EvaH (Aug 2)

Excellent to hear!

by annie63 (Jul 29)

Thanks EvaH
I’ve had a good month & I’m feeling quite positive once again.

by annie63 (Jul 29)

Thank you

by annie63 (Jul 29)

Thank you so much for your words … I’ve stayed away from the internet since I posted this & I do feel great (normal). I had another bcr test yesterday & this time I haven’
Category: Uncategorised

Replies: 10

Last updated: 2 August 2021
skiinglaketahoe on 31 July 2021

Category: Treating CML

Replies: 4

Last updated: 1 August 2021

Bosutinib
by skiinglaketahoe (Aug 1)

Hi
Very briefly, as it's such a long, boring and complicated story..............
Yes, I have been on the forum for a long time. I was dx in 2005 and intolerant to both glivec and dasatanib. I

by Jmbnccyn (Jul 31)

Hello, I see that you have been in this forum for 14 years, after so long I am curious why you switch to bosutinib, after so many years have the previous TKIs stopped working? Or is it for other

by skiinglaketahoe (Jul 31)

Thank you Humberto, that's very useful and as you say we are all different.
Good luck with your treatment
Susan

by Humberto (Jul 31)

Hi.
I was on bosutinib few months ago. I had some diarrhea 3-4 weeks, but it disappeared. Try to take it after meal and it got better.
It was very effective, decreased BCR levels really fast. But
Category: Treating CML

Replies: 4

Last updated: 1 August 2021
Vikram on 23 July 2021

Category: Blood tests

Replies: 23

Last updated: 1 August 2021

WBC
by Vikram (Aug 1)

Hi rc,
BCR-ABL report every 8 months
9/2019 - 2021 ( 2 time)
No future plan...

by Vikram (Aug 1)

Thanx reply...

by EvaH (Jul 31)

Based on the medication prescribed and wbc, the doc thinks you have a minor infection and/or an allergy.
How many people do you need to ask before you believe that based on the information you

by RC Kirk (Jul 31)

Vikram, I'm curious as to your plans for future CML treatment. Are you going to continue ramping your imatinib dose up and down?
Will you try to go treatment free for an extended
Category: Blood tests

Replies: 23

Last updated: 1 August 2021
VinayJagnani on 25 July 2021

Category: Blood tests

Replies: 3

Last updated: 29 July 2021

BCR Levels
by JPD (Jul 29)

while it sucks not seeing that magical (and for some of us mythical) NOT DETECTED - your numbers are great and you are kicking CMLs ass. Rest easy.

by VinayJagnani (Jul 25)

Hello Sandy,
Thanks for the response. It's a relief to read your response and your guidance on that.
Yes, you are right.. I was expecting 2 continuous reports to have not detected, but that has not

by sandy craine (Jul 25)

Hi,
looking at your PCR results, I can't see why you are overly worried. Your last two results are both very low - undetected and 0.068. Is your worry because you have had two results that are

by VinayJagnani (Jul 25)

Hello All,
I hope everyone is safe and doing fine in this pandemic times.
I was detected with CML in September 2018 and have been on Imatinib 400mg. Below are my BCR Levels
From September 2018 to
Category: Blood tests

Replies: 3

Last updated: 29 July 2021
jjhollis100 on 21 October 2007

Category: Uncategorised

Replies: 4

Last updated: 28 July 2021

Bleeding Eyes
by Mukul (Jul 28)

Hi Jason,
Trust you are doing well!
I have started my Dasatinib recently and my eyes has also got bloodshot as a side effect. Can you please suggest how you managed this side effect?
Thank you!

by Steven D (Oct 25)

Hi
This is a very common side effect.

According to my local optician who coincedently also is a specialist at Moorfields eye hospital he recommends that NO eye drops are used as this only

by Paul Cooke (Oct 24)

My wife frequently has this problem, she senses a popping sensation, and when she checks, there is what appears to be a bursting of the small blood vessels in the whites of the eye.

On one

by keith Pratt (Oct 22)

Hi Jason

Happened to me as I remember, some years ago, could not explain as to why, used to feel my eye pop and there it was all over blood. It was put down to bursting blood vessels etc. Did
Category: Uncategorised

Replies: 4

Last updated: 28 July 2021
Krissi0913 on 24 July 2021

Category: Food & fitness

Replies: 2

Last updated: 27 July 2021

High Potassium Levels - What Causes it?
by Krissi0913 (Jul 27)

Hi Sandy! Thank you for the response... I am north of 5.0 mmol/L, hence the low potassium diet. I am not on any other medications other than Sprycel and am generally in good health - except

by sandy craine (Jul 25)

Hi,
exactly how high is your potassium level? A healthy range is between 3.5 and 5.0 mmol/L. Hyperkalemia, or high potassium, occurs when the level of potassium in your blood goes above this

by Krissi0913 (Jul 24)

I just found out my potassium level is high and was told to start a low-potassium diet. Two questions for the group: (1) Does anyone know if this is likely related to my taking Sprycel or just
Category: Food & fitness

Replies: 2

Last updated: 27 July 2021
TimoD on 9 June 2021

Category: Treating CML

Replies: 7

Last updated: 26 July 2021

Not the PCR result I was hoping for
by TimoD (Jul 26)

Hi!
I received my 7,5 month PCR result on Friday and it was 1,5 %. So currently I am making progress on nilotinib 800 mg. Still struggling with low blood counts, thus I will be downgraded to 600 mg

by alexmcpee (Jun 28)

Hey Timo,
The increase in Nilotinib might just do it until things stablise and your other levels start to hold. Hang in there mate.
Al

by TimoD (Jun 22)

Just to update. I am on a full dose (800 mg daily) nilotinib and with support from platelet transfusion and growth factor.
Since my PCR rose to 18 % at six months and I am lagging behind milestones

by alexmcpee (Jun 11)

Absolutely mate. We panic and for the most part our doctors don’t. Exactly that’s my thought you responded well in the beginning so stay the course I am sure it’ll all come
Category: Treating CML

Replies: 7

Last updated: 26 July 2021
vonnie on 19 July 2021

Category: Uncategorised

Replies: 3

Last updated: 23 July 2021

Buscopan and Imatinib
by vonnie (Jul 23)

Hi John. Thank you very much for your very informative reply. I have given it some thought after writing on here and have decided against Buscopan as I believe it would be of little use to me.

by johnw1001 (Jul 23)

Hi Vonnie,
Just a few comments .Imatinib in some patients expresses the well known side effect of gastro-intestinal irritation and in the product literature this is listed.As a long term user of

by sandy craine (Jul 20)

I don't think it is advisable to take Buscopan at the same time as imatinib. You should leave at least 2 hours between the two.
Sandy

by vonnie (Jul 19)

Hi all. I'd like some advice please. I suffer with IBS and am wondering if I can take buscopan with my Imatinib. Any advise would be gratefully received. TIA.

Cheers
Vonnie
Category: Uncategorised

Replies: 3

Last updated: 23 July 2021
ssss on 21 July 2021

Category: About CML

Replies: 10

Last updated: 22 July 2021

New CML diagnosis of my son
by ssss (Jul 22)

Thanks for the reassurance. If even 400mg is difficult to handle at 49kgs then the sudden weight loss at 800mg was expected I guess.

by Buzzm1 (Jul 22)

ssss, no worries about the very slight increase; it's insignificant. Your son is in a very good place after his relatively short period of treatment. A CML level under CCyR (1.0)

by ssss (Jul 22)

Hi EvaH, I just checked the reports again and yes the numbers are correct. He was diagnosed in September so he just completed 10 months on imatinib.
Thank you for extending your support.

by ssss (Jul 22)

I sensed it wasn't the right decision either. I hope it doesn't affect his progress now. I'm guessing the results aren't as good because his body is still adjusting to 400mg instead of 800mg? I mean
Category: About CML

Replies: 10

Last updated: 22 July 2021
Heidi S on 18 July 2021

Category: Side effects

Replies: 16

Last updated: 22 July 2021

Breast pain?
by sandy craine (Jul 22)

Heidi,
'Normal' range depends on who is saying it - ie. from which reference. Do you have the actual figure or did your doctor tell you?
Sandy

by Buzzm1 (Jul 20)

Heidi, when your onc allows you to begin reducing your dosage, let us know what your new BCR-ABL readings are:
2021 (01) 0.12; (04) 0.09; (07) 0.32
2020
2019 find your prior readings

by EvaH (Jul 19)

Ovarian cysts come and go , i had em before cml and i have em now.
I also had beign lump on my brest removed, before cml. All of this happened between 35-40 for me. Its kinda just the age for it.

by Felix (Jul 19)

Hi Heidi,you sound like you are on a real downer ,upset and depressed please don't be .try to have a more positive mind set .You say you take a multivitamin that's no good ,there's not
Category: Side effects

Replies: 16

Last updated: 22 July 2021
EvaH on 16 July 2021

Category: Uncategorised

Replies: 3

Last updated: 22 July 2021

Covid vaccine :Going for Pfizer after Sinopharm
by EvaH (Jul 22)

No major = bone pain about 24hrs after injection which resolved overnight and arm tenderness at injection site for 2 days.

by EvaH (Jul 19)

Yes, i think it'll be bumpy ahead for the uk. Sky news had a surprisingly scientific comparative analysis of Netherlands vs Uk reopening. https://news.sky.com/story/covid-19-can-the-uk-avoid-

by sandy craine (Jul 18)

Hi Eva,
Delta (aka Johnson) Varient is rampant here in the UK too. Does not look good, especially after the current restriction (mask wearing/distancing etc) are being lifted here in UK on Monday. I

by EvaH (Jul 16)

Hi all
Due to rampant delta variant where i live, and that it's been 6 months since i had the sinopharm vaccine (chinese developed vaccine, not common in the west), I've been advised to get a Pzifer
Category: Uncategorised

Replies: 3

Last updated: 22 July 2021
kylelawkc on 3 May 2018

Category: Side effects

Replies: 4

Last updated: 21 July 2021

Nilotinib—Hair Loss
by Mls (Jul 21)

Just wanted to let you know what my doctor did …she would not let me go that low she strongly suggested that I go to 400 a day and she wants to see how my body works with that dosage. I

by Mls (Jul 21)

Hi there that’s great news to hear …I am currently at 600 mg they’ve reduced me to 400 mg per day I am hoping that my hair will start to grow at this point. It seems that it never

by drudesen (Sep 28)

This is very encouraging to hear. I just placed a call to my onc.
I am on 600mg of Tasignia and have been since I started in 04/18.
I want to go down to 150mg if possible!!! Slow reduction I know

by cmljax (May 3)

When I was on Tasigna 600 mg/day, my hair stopped growing for about 3 months. As I began to reduce dose ffirst to 450 then to 300 then to 150, my hair started growing again. So when you
Category: Side effects

Replies: 4

Last updated: 21 July 2021
JPD on 22 June 2021

Category: Treating CML

Replies: 18

Last updated: 20 July 2021

Dose reduction for everyone (MMR and lower)? DESTINY study.
by joflo (Jul 20)

Ah thanks for the update it was 10 yrs since I saw him...

by AlastairC (Jul 19)

I think Prof Clarke has retired from clinical practice.

by joflo (Jul 19)

Hi Buzz thanks so much for this yes 10 yrs is a long time and ur right given I’m not good at taking it these days they are probably using it as stick rather than carrot method to not

by joflo (Jul 19)

Hi there yes I know there’s a few others who just deal with pharmacist..not unusual nowadays probably a resource issue . I don’t mind just seeing the pharmacist as I was only ever with
Category: Treating CML

Replies: 18

Last updated: 20 July 2021
scuba on 19 July 2021

Category: Uncategorised

Replies: 1

Last updated: 20 July 2021

Adding fermented foods to diet improves inflammation markers
by johnw1001 (Jul 20)

Hi Scuba,
I am a convert to what you have related.Sauerkraut and kimchi are not only beneficial because they are fermented but also because they are cruciferous/brassicas or in other words

by scuba (Jul 19)

https://www.genengnews.com/immunology/multiomics-clinical-trial-compares...

Our ancestors ate off the land in the same way animals around us currently do. Our ancestral food was laden with
Category: Uncategorised

Replies: 1

Last updated: 20 July 2021
sandy craine on 19 July 2021

Category: Other conditions

Replies: 0

Last updated: 19 July 2021

Dr. John Campbell video - COVID-19: risk factors linked to post vaccination breakthrough infections
by sandy craine (Jul 19)

As always, worth watching Dr. John Campbell.....clear information regarding risk factors post Covid-vaccines.
Category: Other conditions

Replies: 0

Last updated: 19 July 2021
Sd on 14 May 2021

Category: Side effects

Replies: 8

Last updated: 19 July 2021

Imatinib and stomach issues
by Humberto (Jul 19)

Hello.
What works for me is to take imatinib in the middle of the bigger meal of the day. I mean, I start to eat. And in the middle, I take the pill, and then I continuous eating.
Cheers.

by Sd (Jun 23)

That is great news. My "feeling good" continues. I hope yours does also.

by AlastairC (Jun 23)

Your experience of halving the dose of imatinib was the same for me. I lost the cramps, much less oedema, nausea and flatulence, and hair thinning began to recover.

by EvaH (Jun 22)

As for diet: many red wines, any neat hard alcohol and/or big anmounts of red meat will almost guarantee me acid reflux at night (high pillows help)
Category: Side effects

Replies: 8

Last updated: 19 July 2021
JPD on 16 July 2021

Category: Blood tests

Replies: 1

Last updated: 18 July 2021

Dose reduction approved (yay!) Liver Panel anxiety (boo!)
by sandy craine (Jul 18)

Why are you giving yourself such a hard time? I would say you are probably very aware that you are overthinking your blood results. Focus all your 'worry energy' on the most important - and

by JPD (Jul 16)

First, the good news. We are gonna drop me down from 400mg of Tasigna per day to 300mg and retest after 3 months. My docs thought it totally reasonable (even though I had to ask for it
Category: Blood tests

Replies: 1

Last updated: 18 July 2021
Poppert on 10 July 2021

Category: Side effects

Replies: 2

Last updated: 16 July 2021

Tasigna stomach pain
by Poppert (Jul 16)

Thank you for your response. It resolved after a couple of days and I’m feeling quite good now.
I got a little anxious when I didn’t quite recognise my body. Only 3.5 years into

by sandy craine (Jul 12)

Yes, you are right, his is one of the side effects of TKI therapies in some people, which may well subside as your body adjusts to therapy. However, if it is distressing you try talking to your

by Poppert (Jul 10)

I started on Tasigna five days ago. After about three days I started having stomach pain. I read this can be a side effect.
Is it common to have this in the beginning? Can I expect it to go away?
Category: Side effects

Replies: 2

Last updated: 16 July 2021