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skiinglaketahoe on 19 August 2021

Category: Uncategorised

Replies: 3

Last updated: 20 August 2021

Ponatinib
by Buzzm1 (Aug 20)

Susan, you might want to ask your onc to first start you on 15mg to gauge your reaction to the Ponatinib. Ponatinib is not known to be an easy TKI to take.
What is your CML history that

by skiinglaketahoe (Aug 20)

Hi
I think I was on 400mg. I've given the pills back now so can't check. It was one pill/day.
I believe I'm starting on 30mg of Ponatinib next week.
Susan

by Buzzm1 (Aug 19)

What dosage of Bosutinib were you on? Oncs typically start CML patients on lower dosages of Bosutinib, i.e. 200mg, and then increase the dosage.
What dosage of Ponatinib have you been

by skiinglaketahoe (Aug 19)

Hi
Is anyone on Ponatinib? I'm starting this next week and would be interested in other people's experiences.
I didn't do well on Bosutinib. I had a rash after 2 days, I stopped it and
Category: Uncategorised

Replies: 3

Last updated: 20 August 2021
Betty8 on 5 August 2021

Category: Treating CML

Replies: 9

Last updated: 25 August 2021

Not responding to treatment 1 year on
by Ismo (Aug 19)

Useful info thanks! yes the side effects profile do seem a little more serious with these two TKIs but of course they are said to be more effective than Imatinib, all about risk benefit analysis I

by Ismo (Aug 19)

I dont know yet still waiting tests from Kings I sincerely hope not.

by EvaH (Aug 19)

For info, I have no experience with NHS guidelines either. From what i have seen advice for CML varies between countries /continents especially depending if you or your insurance pays for treatment

by David Fitz (Aug 18)

Second line decision between dasatinib and nilotinib is generally down to issues such as previous heart problems, or potential for lung problems. Both drugs are perfectly approved for second line (
Category: Treating CML

Replies: 9

Last updated: 25 August 2021
scuba on 12 August 2021

Category: Uncategorised

Replies: 0

Last updated: 12 August 2021

The sun, vitamin D and where you live
by scuba (Aug 12)

https://gml.noaa.gov/grad/solcalc/azel.html

Above is a link to a solar elevation calculator based on time of year and where you live.
As you know by now, vitamin D is vital for good immune
Category: Uncategorised

Replies: 0

Last updated: 12 August 2021
scuba on 8 February 2018

Category: Other conditions

Replies: 7

Last updated: 9 August 2021

TKI's affect kidney function
by Sunny (Aug 9)

David, what a wonderful website Sci-Hub is, thank you .

by Mick E (Aug 9)

Only just read this post!
im having problems with muscle loss and a big decrease in exercise capacity since treatment with Nilonotib started. Is there any way of reducing the effect it has on

by Nimbus2 (Aug 9)

Thank you, David. My GFR fluctuates wildly. Four weeks ago it was 64 and today it is 54. I was wondering whether this is a dasatinib issue.

by David Fitz (Aug 9)

You're right - it seems Sci Hub has moved to https://sci-hub.tf/
I've edited my comment.
David.
Category: Other conditions

Replies: 7

Last updated: 9 August 2021
FirefighterCML on 21 July 2021

Category: Uncategorised

Replies: 4

Last updated: 9 August 2021

I NEED HELP / New Results and Questions about dose reduction
by Maddie (Aug 9)

I started on 50 mg. From Dana farber
june 20. 37
sept. .00126
Nov. .0055
march. .0187. Went o bit up after surgery
MAY. UNDETECTABLE

Dr

by SueAngel (Jul 24)

Hi. Here are some links. I have read many of the posts on this site and saved articles along the way. Hope this helps.

https://zero.sci-hub.se/6751/889c75a25a79cc4c23c0cfb6548a0680

by AlastairC (Jul 23)

Hi
Congrats on your excellent response.
You might find it useful to view this video which is Prof Richard Clarke talking about dose reduction and TFR in relation to the UK Destiny Trial at the CMLSG

by ColoradoGuy (Jul 23)

Regarding the bug bites I had a similar situation two and a half years ago. I got bit near my ankles and it did not go away for over a year. Even when it did I was left with a little bruise like
Category: Uncategorised

Replies: 4

Last updated: 9 August 2021
Heidi Kuyper on 3 August 2021

Category: About CML

Replies: 2

Last updated: 4 August 2021

UPDATE (Successful pregnancy and healthy babies on Sprycel and Bosulif)
by David Fitz (Aug 4)

Wondeful! Congratulations.
More and more it seems men have nothing to worry about having kids with TKIs.
David.

by EvaH (Aug 4)

Fantastic update heidi!!

by Heidi Kuyper (Aug 3)

Just an update for those who may be in the same situation. My husband was diagnosed with CML in 2017 and since then has taken every TKI but Tasignia. We currently two healthy children one born while
Category: About CML

Replies: 2

Last updated: 4 August 2021
sandy craine on 4 August 2021

Category: Uncategorised

Replies: 0

Last updated: 4 August 2021

CML treatment and Pregnancy - Reminder
by sandy craine (Aug 4)

Managing Pregnancy during CML treatment. iCMLf conversation detailed in post pinned to the top of this page
sign in tomorrow 5th August.
Sandy
Category: Uncategorised

Replies: 0

Last updated: 4 August 2021
ADJL on 23 June 2010

Category: Uncategorised

Replies: 32

Last updated: 3 August 2021

Fertility on Dasatinib
by Heidi Kuyper (Aug 3)

I know this is an older post but just an update on my own situation with my husband who was diagnosed. We've both had two successful pregnancies and healthy babies while he was on Sprycel, for

by MekaMa (Dec 17)

Hi,
I saw your post and would love to know how you ended up proceeding. Did you conceive through IVF or the good ole fashion way? If the good ole fashion way, how is the baby?

by sarahz (Mar 8)

Hi all
I was diagnosed of cml 9 years ago at the age of 25 i was married then & i didn't have kids , I'm asking about pregnancy while on sprycel because all the comments I read are concerning

by sarahz (Mar 8)

Hi all
I was diagnosed of cml 9 years ago at the age of 25 i was married then & i didn't have kids , I'm asking about pregnancy while on sprycel because all the comments I read are concerning
Category: Uncategorised

Replies: 32

Last updated: 3 August 2021
scuba on 16 July 2021

Category: Uncategorised

Replies: 15

Last updated: 3 August 2021

Treatment Free Remission (TFR) update:
by snowman 35 (Aug 3)

So happy for you Scuba!!

by scuba (Jul 27)

I take 800 mg per day in the morning on an empty stomach.
It is a strong anti-histamine on its own and great during allergy season (pollen) - no sneezing.

by Felix (Jul 27)

Hi Scuba ,I am interested in Quertecin. Could you tell me how much you take and how often ,and can you take it long term .Thank you ,Denise.

by scuba (Jul 27)

I was told by M.D. Anderson researchers that TFR can be maintained as long as PCR values are < 0.1%. Given that I am "undetectable" three months into my TFR experiment, if I do become
Category: Uncategorised

Replies: 15

Last updated: 3 August 2021
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