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Simon Allchin on 18 October 2020

Category: Treating CML

Replies: 4

Last updated: 21 October 2020

Stem cell transplant advice
by Simon Allchin (Oct 21)

Thanks Alex

by alexmcpee (Oct 20)

Hi Simon,
I also can’t comment but what I can do is wish you nothing but the best for your treatment and I hope one day you can be stable and/or rid of this disease. I am sure you’re in

by Simon Allchin (Oct 20)

BCR-ABL only got below 10% (IS) once but my main challenge has been adverse effects on my liver. Have achieved stability there with the aid of steroids but BCR-ABL back up over 36% (IS). Still

by ColoradoGuy (Oct 20)

I do not have advice regarding that but I am sure a few of the people who have had one will chime in. I think Sandy has a link to her journey for a read. I was wondering what your BCR/
Category: Treating CML

Replies: 4

Last updated: 21 October 2020
Zaccar on 13 October 2020

Category: Treating CML

Replies: 2

Last updated: 16 October 2020

Article posits that non adherance to treatment in CML is widespread! What about you?
by cmljax (Oct 16)

If you cannot have an honest relationship with your oncologist, it's time to find a new one.
Lowering dose requires more frequent testing to insure the disease remains under control.

by alexmcpee (Oct 13)

Personally I respect what the professionals say and if they say this is the dose to take then take it. If for any reason some are tempted to reduce dosage themselves without the advice of those

by Zaccar (Oct 13)

I preface this by saying no judgement please. Do you all respect the posology prescribed by your physician. Did some of you actually decide to avoid the hassle of arguing with your doctors and just
Category: Treating CML

Replies: 2

Last updated: 16 October 2020
savedbygrace on 9 October 2020

Category: Treating CML

Replies: 6

Last updated: 10 October 2020

New to Imatinib
by Roza (Oct 10)

Many Thanks, your story definitely gives new CMLers like me hope. I know I'm lucky to have great treatment available and to be alive. For many like me, I think a lot of the mental drain in the early

by Tbrand (Oct 10)

5 years on imatinib now and no side effects. After the first 4 months all discomforts disappeared. The medication is killing cancer cells and your body is full of dead cancer cells. Your going to

by Roza (Oct 10)

Hi, I am new to imatinib for three months now and also get bone pain, but mostly in the lower legs around the shins which is manageable around the house but really comes on badly after only a short

by alexmcpee (Oct 10)

I 100% agree that anxiety can exacerbate symptoms and cause new ones. That’s been my experience and I too practice mindfulness and meditation it works wonders for me most of the time. There
Category: Treating CML

Replies: 6

Last updated: 10 October 2020
ipmaki on 17 August 2020

Category: Treating CML

Replies: 18

Last updated: 14 September 2020

30 month MMR Therapy Goal?
by argearge (Sep 14)

Thank you. The problem is, I do not have any side effect from the imatinib. What was the reason you changed?

by Felix (Sep 13)

Hi,I changed from400mg Imatinib when I was at 0.4% to Dasatinib.Doc wanted me to start at 100 mg but I refused so I started on 50 mg .I reached Undetectable in less than five months ,I am now

by argearge (Sep 13)

Thanks for your answer. The main questions I have is if TFR is still a real goal and can I still play soccer ? I am in a soccer team. I am afraid of the possible adverse effects, especially the

by kat73 (Sep 13)

Do it. Switch to dasatinib. 140 is too much, but it won't do any harm for a couple of months. By then, I'll lay money you will have a nice reduction in your PCR number and
Category: Treating CML

Replies: 18

Last updated: 14 September 2020
snowman 35 on 3 September 2020

Category: Treating CML

Replies: 3

Last updated: 4 September 2020

Are we in higher risk for secondary cancer?
by snowman 35 (Sep 4)

This is exactly what i persumed. Also I read that they did not know about the patients heridity, if they were smoking or if they had other therapies for other diseases....

by Nimbus2 (Sep 3)

I have googled and have found that the data presented are inconsistent. The lists of the most predominant second cancers vary from report to report. I find it unclear whether the increase in second

by alexmcpee (Sep 3)

I have read that those that suffer from Cancer are upto x4 times more susceptible to get another Cancer. I can’t remember the source.
But I prefer to live in the now and at the moment that

by snowman 35 (Sep 3)

Hi every one!

I accidentally read an old post (i wish I had not) and then some old studies that cml patients have about 30% more chances for secondary cancers.Is anyone a were of this?
Category: Treating CML

Replies: 3

Last updated: 4 September 2020
sandy craine on 27 August 2020

Category: Treating CML

Replies: 0

Last updated: 27 August 2020

STAMP inhibitor asciminib (ABL001) meets primary endpoint of Phase III CML study
by sandy craine (Aug 27)

Asciminib - the new TKI developed by Novartis - Data from phase lll study (hopefully) show we can add this to our treatment options for CML, especially for those of us who are intolerant or
Category: Treating CML

Replies: 0

Last updated: 27 August 2020
hierplane on 3 August 2020

Category: Treating CML

Replies: 2

Last updated: 22 August 2020

Veenat (Imatinib) - Where to Buy
by Vijay Kumar Verma (Aug 22)

From India,lots of generic imatinib brand available. You can also buy generic dasatinib.

by sandy craine (Aug 4)

Hi,
I am not sure of the situation regarding access to generic imatinib in Pakistan and I can't find much information, so I suggest you contact the following CML patient group who may be able to

by hierplane (Aug 3)

Hi
Can anyone advise where I might be able to buy GENUINE 400mg veenat in Pakistan or the UK please? My mother from Pakistan has CML but no Imatinib is available there.
Thank you!
Category: Treating CML

Replies: 2

Last updated: 22 August 2020
Mbwynne on 21 August 2020

Category: Treating CML

Replies: 2

Last updated: 22 August 2020

Swollen Eye lids
by Mbwynne (Aug 22)

Thank you John very much.

by johnw1001 (Aug 21)

Hi
This is quite a common condition and side effect of tki s and is referred to as eyelid edema or peri -orbital odema when it surrounds the tissues of both eyes and especially eyelids.There is a

by Mbwynne (Aug 21)

hello, has anyone come up with any way to reduce swelling of the eye lids and face - it is a reaction to 100 Disatnib.

Many thanks Mary
Category: Treating CML

Replies: 2

Last updated: 22 August 2020
Zaccar on 13 August 2020

Category: Treating CML

Replies: 11

Last updated: 15 August 2020

Newbie reasonnable doctor expectation?Glevec or Tasigna as first line treatment?
by Zaccar (Aug 15)

Yes allastair I'll avoid missing doses thanks for the advice! Will you go lower than 200mg?
Just by talking to you guys and thinking about my treatment goals dose reduction

by AlastairC (Aug 15)

Hi. I'm not sure about another TFR attempt. My first aim to get back to log 4 reduction - BCR-ABL below 0.01%. If I can get there and sustain that for a few months I would want to go back to

by alexmcpee (Aug 14)

I can echo all those feelings buddy and those thoughts sometimes creep back in. You’ll have months when it’s relatively easy and others where you are consumed by it. At least that’

by Zaccar (Aug 14)

Thanks for that reality check. Quite frankly the fact that we can expect to live normal lifespan is a miracle on it's own. Happy to know that there's a light at the end of the tunnel.
You
Category: Treating CML

Replies: 11

Last updated: 15 August 2020
Ontasigna on 11 August 2020

Category: Treating CML

Replies: 1

Last updated: 12 August 2020

Aspirin and Tasigna
by Mixail (Aug 12)

I take asprin every day with 400mg of Imanatib for 2 years no problem so far. But check with your oncologist. Mine said it was ok for me.

by Ontasigna (Aug 11)

Hi All,
I have been advised to take Aspirin by Physician for severe back pain.
I did check the drug interaction. It show No interaction.
Shall i go ahead? Has anyone taken it.
Kindly share your
Category: Treating CML

Replies: 1

Last updated: 12 August 2020
MartinZA on 29 July 2020

Category: Treating CML

Replies: 4

Last updated: 8 August 2020

Thoughts on Vitamin D
by Lucky (Aug 8)

Hi Tom,
May be you are right. May be TKI-s cause the levels of vitamin D to go down and we need to supplement with higher dosage. When I started treatment with Tasigna 600mg in Oct 2020 I

by tom888 (Aug 1)

I would also like to mention something about vitamin D. I have noticed that in cases of people not suffering from cml, vitamin D rises faster than all of us. In our case it goes up with difficulty

by MartinZA (Aug 1)

Hi scuba
Wow! Thank you so much for taking the time to write me this incredibly detailed response. So interesting, so practical and so very valuable. The timing regarding half-

by scuba (Jul 29)

Hi Martin,
Most cells in our bodies have the vitamin D receptors (VDR) on their membrane surfaces especially white blood cells. Vitamin D is essential in activating T-cells which fight cancer and
Category: Treating CML

Replies: 4

Last updated: 8 August 2020
Whitey on 4 August 2020

Category: Treating CML

Replies: 7

Last updated: 7 August 2020

100 mg sprycel
by POPPY (Aug 7)

My boyfriend was on 100mg earlier this year & his platelet counts crashed & his BCR-ABL went up to 0.15 (prev was 0.05 when he was on Nilotinib).
His doc reduced it to 70mg and his

by Whitey (Aug 6)

My doctor is worried that I may develop a resistance to sprycel if I lower dose. I suppose its possible, but seems unlikely. I am going to push for dose reduction to 50mg. Hope to be at 20mg

by scuba (Aug 5)

100 mg is very high for most people. New protocols are suggesting 50 - 70mg starting dose. And this was known before 2018.

https://pubmed.ncbi.nlm.nih.gov/29723397/

Dosage is set during clinical

by Whitey (Aug 5)

Thanks, I agree. The 100mg is just draining me of all energy, hoping 50mg will change that.
Category: Treating CML

Replies: 7

Last updated: 7 August 2020
bendicco on 19 July 2020

Category: Treating CML

Replies: 0

Last updated: 19 July 2020

CBD
by bendicco (Jul 19)

Hi all. I have read that many of you CML folks have been using CBD for the pain (that our oncologists say is not from the CML or the meds!) I was diagnosed almost 4 years ago with CML and am
Category: Treating CML

Replies: 0

Last updated: 19 July 2020
bendicco on 10 June 2020

Category: Treating CML

Replies: 8

Last updated: 7 July 2020

CBD
by Crfharris (Jul 7)

Thanks for the information. Once again, it’s so encouraging to hear from others who have been on imatinib for such a long period of time. This site has been so helpful for me.

by andycat (Jul 7)

hello,
I have some pain in my left leg as well, I take imatinib 200 mg a day for cml 14 yrs. this month! So a lot to be grateful for but we really could have done without

by Crfharris (Jun 15)

Olivia,
Thank you for sharing that with me. My pain is also at night. Still just one leg (left also) and arms are fine.
This forum is so helpful . Thanks to everyone who contributes.

by Olivia (Jun 15)

I have been on imatinib for over 10 years now, and I certainly get pains in one leg. It's usually the left leg, but some days (I say days, but it's much more common and annoying in the
Category: Treating CML

Replies: 8

Last updated: 7 July 2020
sandy craine on 12 June 2020

Category: Treating CML

Replies: 3

Last updated: 26 June 2020

iCMLf 4 Webinars for June/July - CML during the COVID-19 crisis
by sandy craine (Jun 26)

For details of one of the next iCMLF webinars on July 2nd and how you can access it see below:
On July 2nd Professor Gianantonio Rosti will be sharing his experience and perspectives.
Management

by sandy craine (Jun 25)

Hi Justine,
Try logging on to iCMLf website- I think they are probably available.
http://icmlf.org
Sandy

by Justine (Jun 24)

Hi Sandy, I missed today's, are the webinars being recorded and if so how do we access it? Thanks

by sandy craine (Jun 12)

The International CML Foundation is holding a series of four webinars focused on the care of people with CML during the COVID-19 crisis.
Beginning in late June, for four weeks, we will be hosting
Category: Treating CML

Replies: 3

Last updated: 26 June 2020
Ontasigna on 17 June 2020

Category: Treating CML

Replies: 7

Last updated: 23 June 2020

Tasigna : Extreme fatigue and Petechiae (CML Progressing???)
by sandy craine (Jun 23)

You do not say how low you D3 status was. It takes some time to increase D3 (week/months depending on daily dose). The following article from Orthomolecular news may be of interest to some:
'How

by Sorin (Jun 21)

I also felt very tired on Tasigna but I did the tests for Vitamin D3 and they came out very low .
I supplemented with vitamin D3, Selenium, Zinc, Vitamin B12 and I feel very good now.

by nazarm4 (Jun 18)

Hello .i had the same issues .have your doctor change your medication to a different tki .it seem you have allergic reaction from it .hope you feel better soon .

by nazarm4 (Jun 18)

Hello .this is what I have tried and it works..stay positive.eat lots of food with iron .drink lots of water daily .have your doctor check you phosphorus and phosphate .and vitamin d and iron level
Category: Treating CML

Replies: 7

Last updated: 23 June 2020
nazarm4 on 18 June 2020

Category: Treating CML

Replies: 1

Last updated: 18 June 2020

Cml
by johnw1001 (Jun 18)

Your comment is of interest because iron intake through diet promotes healthy red blood cell development and especially maintains good levels of hemaglobin.Some have suggested that adequate iron

by nazarm4 (Jun 18)

Hello every one .have lots of side effects from
gleevec .
found a solution =eat lots food contains iron .
Category: Treating CML

Replies: 1

Last updated: 18 June 2020
andre82 on 11 June 2020

Category: Treating CML

Replies: 2

Last updated: 11 June 2020

Setback with imatinib, now on Nilotinib
by ColoradoGuy (Jun 11)

I would look into Dasatinib instead as Nilotinib approaches the disease very similarly as Imatinib. It may require being on the phone for a while and possibly arguing with your oncologist but

by alexmcpee (Jun 11)

Hi Andre,
I does take time to adjust. Your cbc looks good now you have switched to Nilotinib. Like you I had high platelets at diagnosis 900 or something and wbc of 330. All have been normal for the

by andre82 (Jun 11)

Hi guys.
Hope you all are doing well!
I was diagnosed this February.
At diagnosis, BCR / ABL was 44.3 and WBC was 94
After 1 month of 400mg imatinib BCR / ABL was 25, WBC 2,14 , but Plt
Category: Treating CML

Replies: 2

Last updated: 11 June 2020
Tedro on 5 June 2020

Category: Treating CML

Replies: 8

Last updated: 9 June 2020

Stopping Sprycel
by Tedro (Jun 9)

Sorry about the link. I guess I coulda selected just a few.

I'd like to ask: If this is what my largest organ(?) the Skin looks like (not unbearable), what do my insides look like? and,

by Tedro (Jun 9)

Thank you ALL very very much.
I had not realized there were replies until a recent email notice.
Again, thank you!
I have read at least one paper talking about Dasatinib as treatment for

by Tedro (Jun 9)

Hi,
Thank you, very much.
Best Regards!

by Tedro (Jun 9)

Hi,
Thank you, very much.
Best Regards!
Category: Treating CML

Replies: 8

Last updated: 9 June 2020
EvaH on 4 June 2020

Category: Treating CML

Replies: 0

Last updated: 4 June 2020

Reminder: Order your meds in good time
by EvaH (Jun 4)

Hi all,
Covid19's main impact for CML folk would appear to be in disrupted supply chains and distracted staff in the supply chain.
I started to try to get more imatanib over 10 days ago, a
Category: Treating CML

Replies: 0

Last updated: 4 June 2020