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bendicco on 9 September 2020

Category: Side effects

Replies: 5

Last updated: 12 September 2020

NEED ADVICE!!
by bendicco (Sep 12)

Hi thanks for your response. My numbers are not detectable and before that they were in the range of 0.004, 0.002 and downward. I have another appointment with him in a few months

by AlastairC (Sep 12)

I think your oncologist needs to think about the dose requirements for getting to MR4, and the requirements for maintaining MR4 when you get there. If you have only been at MR4 for 6 months or so it

by bendicco (Sep 10)

Thanks for your response! My oncologist refuses to agree to reducing my imatinib to 200 as he says it is not a therapeutic dose and my numbers will go up again. I have been less than 0.01 for

by AlastairC (Sep 10)

Hi Bendicco. I can't remember where your BCR-ABL is and whether/how long you are in MMR. If you are long term in MMR/MR4, it might be worth trying a reduction to 200mg of imatinib. When I did
Category: Side effects

Replies: 5

Last updated: 12 September 2020
ShawnJ on 9 September 2020

Category: Blood tests

Replies: 5

Last updated: 10 September 2020

PCR Increase
by alexmcpee (Sep 10)

Ahh that’s really good news! Yes it’s something we all have to learn I freak out as much as the next person I kind of want to save my worries for a time when/if I need to worry and as I

by ShawnJ (Sep 10)

Update
The doctor called me and explained to me that the lab was mistakenly reporting the p190 transcript and should only be reporting the p210. He had the lab re-chart my results since diagnosis

by Lucas (Sep 10)

Hey, Shawn! The same thing happened to a patient here in Brazil and it wasn't anything to worry about. He's still in remission (PCRU) and have no other problem. Just to be on the safe side,

by ShawnJ (Sep 10)

Alex,
Thank you for the reply.
I have searched the far reaches of the web to see if I could find something where the P190 jumped like that in a test result, there isn't much of anything out
Category: Blood tests

Replies: 5

Last updated: 10 September 2020
jriccoboni on 9 September 2020

Category: Uncategorised

Replies: 1

Last updated: 9 September 2020

Vitamin C
by Felix (Sep 9)

Hi, I take Nu U Nutrition.

by jriccoboni (Sep 9)

Vitamin C supplement brand suggestions anyone?
Category: Uncategorised

Replies: 1

Last updated: 9 September 2020
Faith_05 on 22 July 2020

Category: Blood tests

Replies: 20

Last updated: 9 September 2020

New to all these
by Faith_05 (Sep 9)

Sandy and Zaccar thank you very much for your replies.
I will seriously consider changing the doctor. Tomorrow I will start my new dose and I hope and wish that everything goes well !!In October i

by sandy craine (Sep 9)

Hi Faidra,
Tasigna: first line treatment in newly diagnosed CML is 600mg (300mg twice daily). I assume the doctor who prescribed 8oomg per day is not expert in CML and may have

by Zaccar (Sep 9)

Wow! congratulations,
I'm a man, very tall and I weigh 120kg and I'm on 800mg and responded to it after ten days (all my blood cells were in normal range). 800mg is a very high dosage

by Faith_05 (Sep 8)

Hi to all!!!
I am going to reduce the dose of tasigna I am taking. From 800 to 600mg.
I just turned and completed five months of treatment.
The reason I do this is because I talked to
Category: Blood tests

Replies: 20

Last updated: 9 September 2020
mozart8 on 4 September 2020

Category: Side effects

Replies: 5

Last updated: 8 September 2020

swelling in left ankle/calf
by mozart8 (Sep 8)

Thank you so much!

by Zaccar (Sep 7)

Small precision,when I started taking tasigna both feet had swelling but the left foot was 10 times worst. The right foot (never happened to me before)was taken care of easily tough. Also stretch

by mozart8 (Sep 7)

I did twist that ankle years ago and have weakness in it sometimes. It never occurred to me before you mentioned it.Thank you for your response!

by Zaccar (Sep 6)

Hello,
Not on spycel, Tasigna but probably TKI induced. I had the same thing as you, same foot same ankle but it went away after a few days of wearing compression socks for at least 12 hours every
Category: Side effects

Replies: 5

Last updated: 8 September 2020
Philiptibbs on 24 March 2019

Category: Side effects

Replies: 25

Last updated: 7 September 2020

Oncologist says CML doesn't cause pain ????
by bendicco (Sep 7)

Got it. I tried CBD cream and it didn’t do it for my pain. I’ve tried every topical cream on the market as well with no relief! I also had no relief from NSAIDS and like you opioids make

by Philiptibbs (Sep 7)

I take only 2 vicodin a day thats it and I use them only for work. The rest of the time I use the CBD cream and capsules because they make me tired and I cant use them at work .

by bendicco (Sep 7)

So sorry you had that experience with your doc, it shouldn’t happen! My oncologist is ok with my use of medical marijuana but only after I stood my ground, insisted he look at our forum on

by Philiptibbs (Sep 6)

I'm not being a smart mouth but in USA the doctors only care about there paycheck and not the patient. I just yelled at my Oncologist so I could get 2 Vicodin per day so I can make it through
Category: Side effects

Replies: 25

Last updated: 7 September 2020
chris23 on 16 August 2020

Category: Reproductive health

Replies: 11

Last updated: 7 September 2020

Nilotinib and fathering children
by chris23 (Sep 7)

Thanks all. It's quite frightening to read on CRUK's website that "you may not be able to become pregnant or father a child after treatment with this drug". However, it is

by cdw5000 (Aug 28)

Just to add in my two cents: 10 years on Nilotinib, 2 healthy daughters ages ~4 and 30 months. I was 38 and 40 at the time of their birth and No break in treatment.
Had to do IVF (wife not me) for

by cdw5000 (Aug 28)

Just to add in my two cents: 10 years on Nilotinib, 2 healthy daughters ages ~4 and 30 months. I was 38 and 40 at the time of their birth and No break in treatment.
Had to do IVF (wife not me) for

by chris23 (Aug 18)

That is a pertinent point. I've perhaps been a little lax and guilty of sitting on the sidelines somewhat. I'd never been through such a health scare before and I'm a passive person, so I'm not
Category: Reproductive health

Replies: 11

Last updated: 7 September 2020
Constance A. Crowley on 6 September 2020

Category: About CML

Replies: 5

Last updated: 7 September 2020

Cognitive Lapse
by AlastairC (Sep 7)

Constance you are not "supposed" to be feeling anything; you are feeling what you are and that is fine; I hope we can help understand what is going on and see your way through it. Everyone

by Constance A. Crowley (Sep 7)

Thanks. I try to deal only in facts but I really don't have any idea how I'm supposed to be feeling or what I'll be experiencing behaviorally. So, then I get paranoid and and start writing about

by sandy craine (Sep 7)

Hi Constance,
5/6 hours of 'broken' sleep is not good and 2 hrs is really not good, so it is not surprising that you are experiencing the cognitive symptoms you describe. To me this all

by Constance A. Crowley (Sep 6)

Insomnia is lots worse. I'm used to 5-6 hours (broken) away night. Lately it's been 2 hrs.
Normal nausea and alternating diarrhea and constipation.
Exacerbation of existing (PTSD especially the
Category: About CML

Replies: 5

Last updated: 7 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
Jason Graves on 24 August 2020

Category: Uncategorised

Replies: 6

Last updated: 31 August 2020

Cause for concern? ???
by sandy craine (Aug 31)

Hi Jason,
during the 11 months after my transplant I was monitored for the expected molecular relapse.... it was not until my PCR result showed the residual ph+ cells were at 0.5% that there was

by Jason Graves (Aug 27)

I just wanted to say thank you for all the good info on our situation. I guess I was off on the number she gave me it was 0.20 not 0.02. That being said I really do appreciate the responses.

by sandy craine (Aug 27)

Hi Jason,
As David has already said 0.02% is a low number and that may well go down again. For a transplant patient the fact that she has achieved this low level of disease at 100 days post

by David Fitz (Aug 27)

Hi Jason,
0.02%, in full numbers means two in ten-thousand. So that is still a pretty low number!
Just so I understand fully, her BMT 3 months ago ... was that a FISH test or a PCR test do you know
Category: Uncategorised

Replies: 6

Last updated: 31 August 2020
RB on 24 August 2020

Category: About CML

Replies: 3

Last updated: 27 August 2020

CML support
by sandy craine (Aug 27)

Hi RB,
yes you are right. I have just heard that owing to the increased workload in dealing with CV-19, the clinicians who organise this event have decided that it will not be possible to go ahead

by RB (Aug 26)

Hi Sandy,
Thanks very much for your response. I’m hoping it will go ahead as it was such a great event. However, C19 has affected so much so I wouldn’t be surprised if it was not able to

by sandy craine (Aug 24)

Hi, yes it is an annual event but obviously this year it will be virtual ..... that is if the clinicians (members of the NCRI CML Subgroup) who organise it are able to take time to do so. We will

by RB (Aug 24)

Hello,
I just wondered if anyone knew if there is going to be a CML support day in the UK in September? I think last year there was one in Leeds. I thought it may be an annual event and wondered if
Category: About CML

Replies: 3

Last updated: 27 August 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
chrisbishop55 on 26 August 2020

Category: About CML

Replies: 2

Last updated: 27 August 2020

Liverpool CML Specialist Unit
by chrisbishop55 (Aug 27)

Thank you. I have sent you a private message - hope you don't mind.

by Tricky109 (Aug 26)

Hi
I do, its based in the new Clatterbridge Liverpool, consultant Nauman Butt.

by chrisbishop55 (Aug 26)

Does anyone attend the Liverpool CML Specialist Unit and can you tell me where it is based and who is the lead consultant now that Prof Richard Clarke has retired?
Category: About CML

Replies: 2

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
Jacqueline Allmark on 15 March 2020

Category: Getting help

Replies: 9

Last updated: 21 August 2020

Mouth ulcers
by Sd (Aug 21)

I am happy to say that my mouth ulcers resolved in June after 5 weeks of no imatinib. When I restarted the med they did not return. I do suggest for those with the mouth ulcers that if you must

by Busaboy (Aug 13)

I've experienced many ulcers in recent years, especially in my throat which I never had before. It led me to several nasopharyngealscopies, as they persisted on multiple occasions. I found

by alexmcpee (Aug 13)

I regularly get Geographic tongue on Tasigna but not ulcers. It seems TKIs fix a lot but also mess up a lot too. Rock and hard place comes to mind.
Hope you get some relief.

by Sd (Mar 20)

I have had mouth issues since the end of January. Like a rough feeling on the sides of my mouth, and sore tongue. After 2 treatments for thrush, I was off imatinib for 2 weeks. My mouth improved by
Category: Getting help

Replies: 9

Last updated: 21 August 2020
saifur360 on 19 August 2020

Category: Side effects

Replies: 2

Last updated: 20 August 2020

Both eyes (white part) looks grey & folded
by sandy craine (Aug 20)

It may be that you are suffering from a condition called Blepharitis? Alex has already asked this but can you clarify what you mean by whites of eyes looking grey? the best and cheapest option

by alexmcpee (Aug 19)

Hi I am not sure what you mean by “grey” a lot of us on TKI have much reder whites of the eye. And I am not sure what you mean by folded. Sounds like you’re possibly having

by saifur360 (Aug 19)

I am on Imatinib (veenat 400 mg) since January 2017. Last September my RQ-PCR was 0.015, for covid 19 I cannot continue my follow-up but I am taking imatinib regular. But now I face a side effect on
Category: Side effects

Replies: 2

Last updated: 20 August 2020
onekayaker on 16 August 2020

Category: Uncategorised

Replies: 2

Last updated: 20 August 2020

Question about MD ANDERSON places to stay
by onekayaker (Aug 20)

Thank you!! I will get to visit her next week hopefully since I will be there for blood work.

Steff

by dftitus (Aug 18)

Here’s a link to a PDF listing places to stay near MD Anderson. I hope you find it useful. https://www.mdanderson.org/content/dam/mdanderson/documents/patients-and-family/becoming-our-

by onekayaker (Aug 16)

I know some folks here are being treated at MD Anderson that had to travel and stay nearby. If anyone can pls post information on decent furnished apts it would be appreciated.
Category: Uncategorised

Replies: 2

Last updated: 20 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