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Rocky Mountain Gal on 8 July 2022

Category: Side effects

Replies: 6

Last updated: 14 July 2022

New member of the club I didn't ask to join
by JoeP (Jul 14)

Rocky Mountain Gal sorry to hear about your wild ride. Your symptoms sound severe. Basically early on a TKI should reduce your BCR-ABL to a much safer level quick within a few months but surely on a

by Rocky Mountain Gal (Jul 13)

On July 3 and 4th we spent time with a couple (including a 3 hour car ride up and back into the mountains) with a couple. They let us know that they had covid symptons on the 5th, (

by scuba (Jul 13)

What are your individual blood counts?
Neutrophils
RBC
Platelets, etc.

by Rocky Mountain Gal (Jul 12)

Any advice or words of encouragement would be greatly appreciated.
Bone marrow results 64% at diagnosis but not in blast, spleen measured 22 cm. 1st E.R visit was b/c they thought my spleen
Category: Side effects

Replies: 6

Last updated: 14 July 2022
Reilly9108 on 14 July 2022

Category: Blood tests

Replies: 0

Last updated: 14 July 2022

BCR ABL1 Results How to Interpet
by Reilly9108 (Jul 14)

Hello
Looking for a answer ..I was Negative for 1 1/2 year now last Lab results 7/5/2022 shows e14a2 b3a2 results 0.1714 positive
e13a2 b2a2 Negative
What would make part of this
Category: Blood tests

Replies: 0

Last updated: 14 July 2022
Mona Gard on 10 October 2018

Category: Uncategorised

Replies: 7

Last updated: 14 July 2022

Nausea
by YourExpress (Jul 14)

I agree that it might help you to get a more nutritious breakfast. I usually have some oatmeal with peanut butter, raisins, or granola with milk. It helps me stay more active during the day, not

by EvaH (Oct 18)

I second the advice about carb heavy meals, i also shifted away from taking imatanib at lunch time because occasional nausea interfered with my work day and so night time was less intrusive. I also

by Richard42 (Oct 17)

I had bad nausea when taking imatinib, until I worked out food timings to avoid it. I found a large ish meal with a good quantity of carbohydrates eg pasta, potato, rice (muesli and oats would also

by Mona Gard (Oct 10)

Yea I work 2nds so I take it at night too. I don't drink much water, I know I should.
Category: Uncategorised

Replies: 7

Last updated: 14 July 2022
Snowman35 on 15 September 2019

Category: About CML

Replies: 4

Last updated: 8 July 2022

I have IBS syndrome. Scuba or anyone who knows please help!
by Rocky Mountain Gal (Jul 8)

Hi John, The very first thing that I would recommend is that you cut gluten out of your diet. It is very inflammatory food. Next, cut out processed food. (Especially fast food!)

by John20247 (Jul 7)

Hi, I was diagnosed with CML 12 years ago, and doing well in remission. I was unfortunately diagnosed with IBS 2 months ago, and it’s been challenging. Any insight or help would be

by Snowman35 (Sep 15)

Thanks show match for the response Scuba!!!

by scuba (Sep 15)

IBS is a condition affecting the large intestine. Dasatinib behaves similar to a salt in the body in how it is absorbed, primarily in the upper small intestine. Dasatinib absorbs very quickly and
Category: About CML

Replies: 4

Last updated: 8 July 2022
OggabetF on 7 November 2019

Category: Uncategorised

Replies: 3

Last updated: 8 July 2022

Interesting case of CML...
by Сhtenstein (Jul 8)

It was an interesting read, and I hope to learn more about such rare cases when I enter veterinary school next year. I’ve just graduated from school and have always dreamt of becoming a vet

by scuba (Nov 7)

https://ascopost.com/issues/november-25-2015/does-low-dose-radiation-cau...
"Our conclusions? First, it is more likely than not that low doses of ionizing radiation increase the risk of

by David Fitz (Nov 7)

Radiation exposure is just one risk factor with CML. It's the only one that's definitively known, but it's is certainly not the only one that exists.
BCR-Abl, the driver of CML, can be

by OggabetF (Nov 7)

The other day on lunch break I was doing research on CML and I came across this case of a Jaguar who developed CML while in captivity at a zoo in Texas. The veterinarian comments that this is
Category: Uncategorised

Replies: 3

Last updated: 8 July 2022
MartinZA on 23 June 2022

Category: Treating CML

Replies: 8

Last updated: 8 July 2022

Is dose reduction possible on imatinib?
by MartinZA (Jul 8)

Hi Chrissie
Thanks for your response - I had actually forgotten about the fact that people halved their doses in DESTINY trial for a year first. I think I'll go and read up on the

by MartinZA (Jul 8)

Hi Pojo
Thanks for the information - that's also something I worry about - that imatinib somehow stops working after a while. The point about frequent testing is really important, and I

by MartinZA (Jul 8)

Hi Israel
Thank you so much for sharing your story and for the detailed information! Very glad you're able to maintain MMR on 400mg, and also interesting that you first increased the dose to

by chrissie (Jul 5)

Hi there
I have been on imatinib since diagnosis in Sept 2009. In 2017 I dropped to 300mgs dose and found after about 9 months my results dropped down to MR4.5/MR5 and a couple were even 0.0000%.
Category: Treating CML

Replies: 8

Last updated: 8 July 2022
Crfharris on 7 July 2022

Category: Uncategorised

Replies: 6

Last updated: 8 July 2022

Dosage Reduction expectations
by Vikram (Jul 8)

Hii Alister
Your dose?? 200/ 400
If 200 ... Last PCR undetactable?(how many PCR undetactable ? Continue...)

by Crfharris (Jul 8)

Thank you.

by AlastairC (Jul 8)

When I reduced from 400mg to 200 mg, the improvement, particularly in stopping getting cramp, was within a week.|I went on to try TFR a year later, which lasted 17 months. The improvement in side

by Crfharris (Jul 7)

Thanks!
Diarrhea, hair loss and “hot flashes” have been my side effects. I think hair had stopped falling out several months ago but looking forward to additional growth.
The near
Category: Uncategorised

Replies: 6

Last updated: 8 July 2022
beero on 16 July 2021

Category: Blood tests

Replies: 6

Last updated: 7 July 2022

18 months - PCR increase
by JoeP (Jul 7)

If you are consistently getting at least 2 zeros after the decimal after only 18 months I would say you are doing stellar. And that’s on Imatinib? I was 11 years on that and reached .003 once

by beero (Jul 7)

I have the update on this after my latest test couple of days ago.
After the "negative" (under 0.0032) result 6 months ago, I again received a "suspicious" result - 0.0030.
The

by Nimbus2 (Jan 13)

I notice in my own case that I have 10 BCR::ABL1 cells in 39,106 copies of ABL1, i.e. 10/39,106 x 100 x 0.6 [laboratory correction for IS] = 0.0153%
I am still in MR3.
I would need, as I see it, to

by beero (Jan 12)

Hello guys,
I owe you an update on this thread. Just got the message from my doctor and my latest BCR-ABL says undetectable.
However, it doesn't really mean I've got a lower result than last
Category: Blood tests

Replies: 6

Last updated: 7 July 2022
scuba on 31 January 2018

Category: Uncategorised

Replies: 4

Last updated: 6 July 2022

Heart health ... role of vitamin D
by WhitneyWhitaker (Jul 6)

Oh, I didn't even know vitamin D played an important role in heart health. This will come in handy for me in the future. Thank you very much. When I was in the hospital with a heart condition

by minwalles (Dec 15)

I completely agree with you. Vitamin D and other vitamins should be taken to maintain health and immunity, especially for the elderly and people with poor health. I take vitamins regularly, but I

by scuba (Jan 31)

I have read a lot of articles on CoQ10
(http://www.lifeextension.com/Magazine/2008/2/Coenzyme-Q10-And-Cancer/Pag...)
and I do have a bottle of it laying around, but I find myself not taking it

by cmljax (Jan 31)

Hey Scuba - what are your thoughts about taking CoQ10 for heart health as well? Good to see you over on this site.
Category: Uncategorised

Replies: 4

Last updated: 6 July 2022
hannibellemo on 8 June 2022

Category: Uncategorised

Replies: 17

Last updated: 6 July 2022

Peripheral Neuropathy on Tasigna - Redux
by JoeP (Jul 6)

Hannibellemo in response to your question of why I am on 800mg… good question. My doc offered to lower it even switch to another drug but I want to get to CMR for once in my life. I am

by JoeP (Jul 6)

Good luck at the podiatrist tomorrow hannibellemo. Let us know what you find.

by hannibellemo (Jul 5)

Thanks for the update, cmljax. Congratulations on your continuing CMR on the low dose. If it weren't for my pleural effusion experience with Pleurx catheter I'd still be on Sprycel. If you

by cmljax (Jul 4)

I have now been on 20 mg Sprycel for 18 months and have remained PCRU. The neuropathy got better for while then returned though not quite as bad as when I was on 150 mg Tasigna. Earlier
Category: Uncategorised

Replies: 17

Last updated: 6 July 2022
scuba on 28 May 2022

Category: Uncategorised

Replies: 3

Last updated: 6 July 2022

Vitamin D
by scuba (Jul 6)

Too much selenium can have side effects (hair loss is one). So don't overdose.
No more than a couple of Brazil nuts per day or 200 mcg supplement per day.
The benefits of selenium is too great

by Vikram (Jul 6)

Hii .
Brazil nuts (selenium) side effects ?
Hair fall problem... Is true ..? Ya mith...

by scuba (Jul 5)

The important thing about supplements is to know what you are buying, what it is for and to treat a "known" deficiency.
Taking supplements without knowing your personal status, dosing, etc

by scuba (May 28)

A very good video summary on dose needed to maintain healthy vitamin D levels by Dr. Eric Berg

https://mail.google.com/mail/u/1/#inbox/FMfcgzGpGKTtvRLnlJTPLnFjPQRLVfDz...

Note how much D3 is
Category: Uncategorised

Replies: 3

Last updated: 6 July 2022
Deni H on 14 September 2021

Category: Uncategorised

Replies: 12

Last updated: 6 July 2022

Holiday Insurance Advice
by florianloncaric32 (Jul 6)

Thanks to the people in the comments who provide important information on this topic. Finding reliable information about this isn't easy since different data is written everywhere. My wife and I

by Patch (Sep 28)

Hi Deni,
Fantastic news that you are going on holiday have a brilliant time..
I was Diagnosed with CML at the end of August 2018. I was a month away from travelling alone to stay with friends for

by johnw1001 (Sep 26)

Hi,
I have come to this debate late but have contributed to previous discussions on Forum on this topic.
There are some well informed insurers out there who realise that CML is not the death

by Richard42 (Sep 23)

Actually the EHIC card is one of the few things which has not changed. If you have one, it’s still valid. On renewal, you apply for a GHIC card now in the UK - which does the same
Category: Uncategorised

Replies: 12

Last updated: 6 July 2022
TJ.B on 20 October 2019

Category: Uncategorised

Replies: 15

Last updated: 5 July 2022

Nilotinib user suffering with anxiety
by JoeP (Jul 5)

You know now that I think of it I too have been very anxious lately on 800mg per day nilotinib. I am in the middle of a move and job change so I associated it to that but in general I am anxious,

by JoeP (Jul 5)

I had many side effects while on Imatinib including stomach and depression issues. Just switched to nilotinib and have a whole new host of issues plus the lingering withdrawal of imatinib. Hang in

by devenavani (Nov 7)

does anybody know if cannabis would be appropriate to take to help with the nausia anxiety and boan pain associated with tasigna ?

by mamodei (Oct 27)

I've a long history of gut problems and the dasatinib has been okay. A bit of nausea, but low level and can be ignored.
Nilotinib was much more of a problem for my digestion. I
Category: Uncategorised

Replies: 15

Last updated: 5 July 2022
grilledcheesesamich on 23 June 2022

Category: Treating CML

Replies: 8

Last updated: 5 July 2022

It's been almost two years and still not in CMR range.
by grilledcheesesamich (Jul 5)

Thanks for all the comments everyone I really appreciate it. Sounds like I maybe had some unreal expectations based on some of the reading I've done and my Doctor's quest to get me to CMR. I

by An (Jul 1)

Cmr is complete molecular remission,I think it means non detectable on pcr,different lab has different sensitivities,so it might differ accordingly,mmr is major molecular remission that is 0.1 IS .

by JoeP (Jul 1)

There are a few milestones we all try to aspire to as CML patients. There are many acronyms and I confess I may not know them all. But in general there are 3 main milestones that I adhere to:
1)

by Christine R (Jul 1)

This may be a stupid question but what do you mean by CMR? I have googled this and it seems to say a PCR showing no BCR-ABL so i assume it is classified as undetected or 0.000 so is that what
Category: Treating CML

Replies: 8

Last updated: 5 July 2022
Kamil on 7 June 2022

Category: Side effects

Replies: 1

Last updated: 5 July 2022

Rash on Dasatinib
by SS86 (Jul 5)

Hi,
My wife experienced the same with dasatinib. It happened twice only then we were able to figure out it was due to the drug.
Speak to your doctor and try a lower dose.

by Kamil (Jun 7)

Hello,
My partner has been on dasatinib for two weeks now and we noticed a rash that appeared on Friday. For the first week she was also taking allopurinol and stopped on Wednesday.
The first
Category: Side effects

Replies: 1

Last updated: 5 July 2022
Evie on 3 July 2022

Category: Side effects

Replies: 5

Last updated: 4 July 2022

Swollen eyes on Imatinib
by Evie (Jul 4)

Hi Janet
thanks for your response. I did wonder if this could be long term as like you I have also tried face roller, diet and still no luck. I will look into the eyelid tape and hopefully

by Janet Treble (Jul 4)

Hi Evie
I was diagnosed with CML in November 2020 and like you have had the same problem with my eyes, swollen eyelids and under eyes.
Sadly its a side effect of taking Imatinib as unsupported

by JoeP (Jul 4)

Swelling around the eyes is quite common. Diet and lifestyle adjustments may help to mitigate the severity. I can tell you I had swelling for years and then when I switched TKIs it almost went all

by Evie (Jul 4)

Hi Pojo
Thank you for your reply that was really helpful. I’m hoping the swelling around my eyes will get better in time but will look into how I could help reduce it by diet.
Category: Side effects

Replies: 5

Last updated: 4 July 2022
Rae_B on 14 June 2022

Category: Side effects

Replies: 2

Last updated: 3 July 2022

Starting dose for Tasigna/Nilotinib
by JoeP (Jul 3)

I was moved to Nilotinib April 12th after 11 years on Imatinib. The imatinib started to fail. I am on 800mg and I can tell you the first 3 weeks was hell. I even dropped to 600 for a day even 400. I

by Christine R (Jun 16)

Although my diagnosis was along time ago and in the early days of both imatinib and nilotinib. I was moved over to Nilotinib in a similar situation to you and was prescribed 800mg of Nilotinib but

by Rae_B (Jun 14)

Hi All
I saw my doctor today and I'm switching from 400mg of Imatinib (which has got me to around 2% in 14 months) I'm resistant to Imatinib and need to switch to Nilotinib.
Category: Side effects

Replies: 2

Last updated: 3 July 2022
Poppy Darling on 20 June 2022

Category: Treating CML

Replies: 6

Last updated: 3 July 2022

Oedema on Imatinib
by Poppy Darling (Jul 3)

Hi Evie
After it first flared up it settled down. It’s worse when I wake up on my eyelids and under my eyes. After a couple of hours it disappears from my eyelids and just above my cheeks it

by Evie (Jul 3)

Hi

Has your oedema improved. I started getting it under my eyes but last few weeks it’s mostly my eyelids.

was just wondering if you have found ways to manage it

by Poppy Darling (Jun 21)

Hi,
Yes, bloods have reduced from that amount to 4.8! All good.

PD

by EvaH (Jun 21)

Yes i understand.
I meant that the eye odema is a cosmetic side effect of the TKI, its not dangerous nor will it impact your health or eye function in any way.
Im not sure of which scale your doc
Category: Treating CML

Replies: 6

Last updated: 3 July 2022
Nimbus2 on 2 July 2022

Category: Uncategorised

Replies: 0

Last updated: 2 July 2022

Dasatinib. Any unexpected improvement in health?
by Nimbus2 (Jul 2)

I wonder whether anyone taking dasatinib has experienced any unexpected improvement in any conditions.
I notice the following:

very good diabetic control
nocturia improving by leaps and bound
Category: Uncategorised

Replies: 0

Last updated: 2 July 2022
KeriF on 7 June 2022

Category: Reproductive health

Replies: 3

Last updated: 2 July 2022

Nervous about TFR
by Lavinia (Jul 2)

Hi Kerri,
Wishing you all the best! I am in the same boat except I will be coming off Dasatinib after 2 years, so I won’t have reached undetectable status yet. I am 40 this year so it’s

by scuba (Jun 11)

I know a CML patient personally who was in your situation and she was on 50 mg dasatinib and near undetectable. She stopped therapy and became pregnant (with twins!). Within a few months her CML

by AlastairC (Jun 10)

I can't offer much practical support - I'm male and on imatinib so no relevant experience.
Just wanted to say good luck, and you can certainly be confident that if your CML counts start

by KeriF (Jun 7)

Hi everyone,
Today was my last dose of dasatinib and I’ll be attempting TFR to try to get pregnant. I’m 33 years old and was diagnosed at 29. Here are my numbers:
1/2019 104% ->
Category: Reproductive health

Replies: 3

Last updated: 2 July 2022