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Damian Gabilondo on 22 March 2023

Category: Uncategorised

Replies: 1

Last updated: 23 March 2023

TFR Update
by Sav_5 (Mar 23)

Hi Damian,

Great news! I hope the next results will be as good as the last one and you tfr will have success!!Do you experience pain after discontinued your treatment? Keep updating us and

by Damian Gabilondo (Mar 22)

Hello, I wanted to communicate my update for the first two months my TFR started, 02/14/2023 0.0013 RM 4.5 first month, 3/14/2023 0.0004 RM5.0 second month, the fall caught my attention after almost
Category: Uncategorised

Replies: 1

Last updated: 23 March 2023
Poppert on 20 March 2023

Category: Organising your life

Replies: 3

Last updated: 21 March 2023

Tasigna timing question
by alexmcpee (Mar 21)

Hiya
I’ve been on this medication for 5 years and I try to stick as close as I can 90% of the time to 8am and 8pm. However their are quite a few occasions where I have taken the medicine and hour or

by Poppert (Mar 21)

Thanks for sharing your knowledge! I never miss the fasting period, it seems easier to keep. So far, my own personal rule has been that I can flex +/- 2 hours in the 12 hours between doses rule. So

by TimoD (Mar 21)

Hi!
I would recommend to stick to the no eating rule since food, especially fatty foods are known to increase nilotinib plasma concentration. I am using nilotinib as well and trying to comply with

by Poppert (Mar 20)

How important is the exact timing when taking Tasigna?
Would you rather “cheat” on the “12 hrs between doses”- rule, or the “don’t eat 2hrs before and 1hr after” - rule?
For example:

I
Category: Organising your life

Replies: 3

Last updated: 21 March 2023
KingBurger on 13 March 2023

Category: Treating CML

Replies: 6

Last updated: 21 March 2023

Ponatinib vs Transplant
by KingBurger (Mar 21)

Thanks for checking in. Started on Friday and so far so good. A little skin sensitivity and mild headache, but that’s it so far (hopefully it stays that way). Let’s see how the blood work comes back

by TimoD (Mar 21)

Hi
Let us know how things are going with ponatinib when the time is right.
Take care

by KingBurger (Mar 15)

Thanks Timo! Will go back and read the study. Hopefully I’ll tolerate the med well and be able to get down to the 15mg dose quickly.
I was tested a couple of years ago for a mutation, after failing

by TimoD (Mar 15)

Hi
I would definitely suggest to try ponatinib first. Given that your BCR-ABL level is very low you have a high likelihood of ponatinib working and overcoming the low level of T315I mutated clone.
Category: Treating CML

Replies: 6

Last updated: 21 March 2023
colleencrane1 on 16 March 2023

Category: Side effects

Replies: 5

Last updated: 20 March 2023

Dasatinib/Sprycel and Bone Density
by Buzzm1 (Mar 20)

Bone density is measured with dual-energy X-ray absorptiometry (DEXA). DEXA is a quick and painless imaging test that uses X-rays to determine whether you have healthy bones, osteopenia or

by colleencrane1 (Mar 20)

Yes! I will keep you all posted!

by colleencrane1 (Mar 20)

Yes! I will keep you all posted!

by kali (Mar 20)

Hi Colleen,
I too have read about dasatinib helping with bone formation and increased bone strength.

I am interested in learning more about this.
Perhaps there will be more information on the
Category: Side effects

Replies: 5

Last updated: 20 March 2023
nicolem on 9 March 2023

Category: Side effects

Replies: 2

Last updated: 20 March 2023

Dasatinib and Pleural Effusion
by kali (Mar 20)

Hi Nicole,
I too had a pleural effusion when taking Sprycel 100 mgm and reduced dosage to 70 and then to 50 mgm, but finally had to get the pleural effusion removed. At that time the Sprycel was

by hannibellemo (Mar 11)

Hi, Nicole,
Many of us do quite well on dasatinib for the first 2 years or so and then a pleural effusion(s) develops. It might be better if they kept her off dasatinib until her effusion totally

by nicolem (Mar 9)

Hi everyone,
I come here for research and help for my mother who was diagnosed with CML three years ago. She tried Imatinib first but it didn't work and she had intense side effects, she was
Category: Side effects

Replies: 2

Last updated: 20 March 2023
vlacer on 15 March 2023

Category: Treating CML

Replies: 0

Last updated: 15 March 2023

New Generic Imatinib
by vlacer (Mar 15)

Yesterday, I received the 30 days’ supply of my Imatinib and noticed that it is different, the label has Archis Pharma as the Mfg. After further research, I found that Archis Pharma is the
Category: Treating CML

Replies: 0

Last updated: 15 March 2023
Kamil on 14 March 2023

Category: Children & young people

Replies: 0

Last updated: 14 March 2023

Lymphocytosis and dasatinib
by Kamil (Mar 14)

Hi all,

I hope everyone is doing well.

We just received our 9month blood and pcr results.

Bcr abl (is) 0.046
But the slightly concerning part is that the lymphocytes are elevated
Category: Children & young people

Replies: 0

Last updated: 14 March 2023
Ammar on 6 March 2023

Category: Treating CML

Replies: 5

Last updated: 13 March 2023

Newly Diagnosed CML patient PH+
by Buzzm1 (Mar 13)

Ammar, a PCR reading of 1.0, or less, means that the CML presents no danger to your health. With your last PCR reading of 0.0957, after only six months of treatment, you are in a position to reduce

by Ammar (Mar 13)

Hi hanni,
Thanks for sharing experience it means a lot, there are number of unexplained questions with every passing day but this kind of support really helps in forward and keeping faith that

by hannibellemo (Mar 12)

Ammar, my first 6 months on dasatinib were horrid! Vomiting the first night and then tremors. I had tremors every evening for at least 6 weeks, they did eventually go away. Then the fatigue...I had

by Ammar (Mar 10)

Hi brother,
Thanks for your time, Yes I usually visited general physician and as per them due to the medicine and current medical conditions my immunity is weak due to which i am having frequent
Category: Treating CML

Replies: 5

Last updated: 13 March 2023
vonnie on 12 March 2023

Category: Uncategorised

Replies: 1

Last updated: 12 March 2023

Lower leg oedema
by hannibellemo (Mar 12)

Vonnie, It's great you are having such a good response to imatinib. We tend to blame our health issues on our TKIs, I do it, too, but swelling that causes your skin to split needs to be assessed by

by vonnie (Mar 12)

Hi all it's been awhile since I've been on the forum. Just to recap I was diagnosed with CML almost 6 years ago and have a very good response to my medication Imatinib. I have had side effects
Category: Uncategorised

Replies: 1

Last updated: 12 March 2023
Alien69 on 3 March 2023

Category: Treating CML

Replies: 0

Last updated: 3 March 2023

New therapy could help chronic myeloid leukemia patients live drug-free
by Alien69 (Mar 3)

See New therapy could help chronic myeloid leukemia patients live drug-free

"The latest research from the University of Adelaide and the South Australian Health and Medical Research
Category: Treating CML

Replies: 0

Last updated: 3 March 2023
Brett0503 on 25 October 2019

Category: Side effects

Replies: 12

Last updated: 3 March 2023

Mylosuppression
by helix (Mar 3)

Men are you ok now ?

What about your platelates??

by kat73 (Oct 27)

Disagree. If it were I, I would go back on Sprycel at 50 mg and tough it out. You are not in danger with platelets at 47.

by Brett0503 (Oct 27)

They adjusted my platelet count late evening yesterday to 47 from 27 after manual differential, some sigh of relief but still low to be off of the drug.

by Sid35 (Oct 26)

Hi - Yes, dasatinib 100mg was stopped completely. Waited couple of weeks. Then restarted on same dose. Same mylosuppression returned. Reduced to 80mg and retried. Same pattern. Reduced to 70mg and
Category: Side effects

Replies: 12

Last updated: 3 March 2023
ayaz ahmad magray on 3 June 2017

Category: Uncategorised

Replies: 10

Last updated: 3 March 2023

Help
by helix (Mar 3)

Hi bro ,

I am also from India .

How are you ? Is your disease under control ??

Update us . My father is having the same problem of low platelates with dastanib . Tell me the

by Sid35 (Jun 18)

Hi Ahmed,
Are you still using this forum? How are you doing? How are your counts now ?
Regards
Sid

by EvaH (Jun 6)

Hi Ahmad
Its a very good idea to become your own specialist and reading around in this forum is a great place to start. This is true for any patient but esp if you live somewhere the health system

by Philip (Jun 4)

Hello, I've been on Sprycel - dasatinib since February of 2009. A lower platelet count is "normal" with Sprycel - dasatinib. I'm down to 50mg of Sprycel and my platelet count
Category: Uncategorised

Replies: 10

Last updated: 3 March 2023
mihir on 1 March 2023

Category: Uncategorised

Replies: 4

Last updated: 2 March 2023

Relapse
by mihir (Mar 2)

Thank you very much... :)

by mihir (Mar 2)

Thank you, I am being treated in India... I unfortunately cannot get on ponatinib because of a heart arrhythmia which the doctor says that I cannot consider ponatinib

by David Fitz (Mar 2)

Asciminib isn't indicated for t315i, though it does have some efficacy for this particular mutation.
Ponatinib is the "go to" TKI for t315i, and often at a lower dose than the standard 45mg one to

by ColoradoGuy (Mar 2)

Ponatinib can combat T315i. Try as low of a dose as you can and still keep your BCR/ABL under control. This would be preferred in my opinion over transplant. I would try low dose or intermittent
Category: Uncategorised

Replies: 4

Last updated: 2 March 2023
Alien69 on 1 March 2023

Category: Side effects

Replies: 0

Last updated: 1 March 2023

TKIs Have Kidney Effects in Long-Term CML Treatment
by Alien69 (Mar 1)

See TKIs Have Kidney Effects in Long-Term CML Treatment
See Effects of Bosutinib Treatment on Renal Function in Patients With Philadelphia Chromosome-Positive Leukemias
Category: Side effects

Replies: 0

Last updated: 1 March 2023
gdesposito on 25 February 2023

Category: Uncategorised

Replies: 1

Last updated: 28 February 2023

Ponatinib/Iclusig side effects
by ColoradoGuy (Feb 28)

There have been others of us who did not get under 0.1 quickly. I believe BDMemphis, Ipmaki, Alex, and myself to name a few. I believe we were all in our late 30's or early 40's when diagnosed.

by gdesposito (Feb 25)

Good morning,
Hope everyone is well. I was recently started on Ponatinib 30mg daily on 2/13/22 and a few days ago the side effects are starting to creep in. Mostly joint pain and fatigue so far,
Category: Uncategorised

Replies: 1

Last updated: 28 February 2023
Dustylloyd on 14 February 2023

Category: Uncategorised

Replies: 16

Last updated: 26 February 2023

Diabetes
by Dustylloyd (Feb 26)

Hi Alex,
I’m now very concerned about the Nilotinib advised dosage, and side effects, on a lot of occasions my liver condition as been commented on in the 12 weeks phone call consultations, having

by alexmcpee (Feb 25)

Hi Pete,
Yeah I am not so sure I agree with your doctors analogy. 1 litre of water and 1 litre of whiskey will do two very different things. TKi and especially Nilotinib is highly toxic. (My months

by Dustylloyd (Feb 23)

Hi scuba,
Absolutely brilliant, and helpful information as always from you, you’ve helped me tremendously and have given me a direction to which I must approach this latest “hurdle” in life,

by scuba (Feb 23)

Type 2 diabetes is a metabolic condition. Drugs (including TKI's) can exacerbate the condition, but TKI's alone are unlikely to be the sole cause.
In simple terms, the liver and the pancreas get
Category: Uncategorised

Replies: 16

Last updated: 26 February 2023
Sd on 9 January 2020

Category: Side effects

Replies: 4

Last updated: 26 February 2023

dry mouth
by Sd (Feb 26)

I use biotene rinse in the morning and at night. Also use biotene drops to suck on several times during the day. That might help you

by alexmcpee (Feb 25)

Ah man never had it before starting TKI and I wake up every morning with Gandhis flip flop. Dry as a bloody desert. So dry I put the TKi in my mouth and it sticks to the roof of my mouth. Bleeding

by Sd (Jan 10)

Hi David,
Thanks for the suggestion about O'Keefe's. I will see if I can find it here.

by David Fitz (Jan 10)

Hi,
Dry mouth is a recognised side effect of imatinb.
I'm not sure what I can recommend over something like aquaphor. I've always found diprobase very effective on dry skin, even if it
Category: Side effects

Replies: 4

Last updated: 26 February 2023
suvankardas on 21 February 2023

Category: Organising your life

Replies: 7

Last updated: 26 February 2023

Imatiniv and normal life
by suvankardas (Feb 26)

https://www.facebook.com/suva.rock

by alexmcpee (Feb 25)

Hey buddy, we can message each other via other comms send me a PM here on the site and I will be happy to give you my details. A problem shared is a problem halved and all that!

by suvankardas (Feb 23)

So kind of you Alex. I never thought I would be answered in such way in community. Can I connect you over Facebook or Instagram?

by suvankardas (Feb 23)

So satisfying to see a teacher in this group. I always thought to be alone with my kind of journey. Thank you Martin for being so elaborative. Hoping help from you in future. Can I connect with you
Category: Organising your life

Replies: 7

Last updated: 26 February 2023
Vikram on 17 February 2023

Category: Uncategorised

Replies: 2

Last updated: 25 February 2023

PLATELET COUNT
by alexmcpee (Feb 25)

In normal range. Just relax you’re doing great.

by hannibellemo (Feb 25)

It's still well within normal range.

by Vikram (Feb 17)

CBC
EDTA WHOLE BLOOD
HEMOGLOBIN (HB). 15.6. [ 13.0-17.0]
(RBC) COUNT. 5.73 high [4.5 -5.5]
WHITE BLOOD CELL (WBC) 7.4 [4.0-10.0]
PLATELET COUNT. 401 [150-410]
RBC AND PLATELET 45.4. [40.0-50.
Category: Uncategorised

Replies: 2

Last updated: 25 February 2023
acspeakman on 31 January 2023

Category: Side effects

Replies: 11

Last updated: 25 February 2023

Bosutinib
by alexmcpee (Feb 25)

Hello, TKi causes quite a bit of havoc with the gut and a lot of havoc with energy levels. I can relate to all the comments. Although I don’t get tummy ache in the traditional sense my whole abdomen

by acspeakman (Feb 25)

Thanks very much for your response, Pat. That is another really interesting option. I think my physician will probably keep me on Bosutinib, because it worked so well so fast. Also she was among

by hannibellemo (Feb 25)

You have another option open to you - instead of dealing with side effects that may make your life quality less than desirable, you could switch to a different TKI. I've done that 3 times in the

by acspeakman (Feb 10)

Hello, thank you for your response. 19 years is a really long time. It's helpful to know you have those kind of high and low days--regarding exhaustion and lack of energy--also. That's what
Category: Side effects

Replies: 11

Last updated: 25 February 2023