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bendicco on 24 February 2019

Category: Side effects

Replies: 2

Last updated: 24 February 2019

ABCESS RELATED TO GLEEVEC?
by bendicco (Feb 24)

Thanks Eva, last bloods in January were all good. Never had any issues like this before, not pleasant but hoping it isn’t related to the Gleevec. But as we all know when we have anything like

by Evelinka89 (Feb 24)

Hello,
abscesses are formed if phagocytosis does not work properly (mainly neutrophils, NK cells) or in case of presence of agressive pathogenic bacteria. What pathogen is causing this ? I

by bendicco (Feb 24)

Hi all. I have been on Gleevec for almost 3 yrs and recently have had an issue with an abccess on my inner thigh beginning 6 weeks ago . It was lanced 2x, antibiotics for almost 3 weeks.
Category: Side effects

Replies: 2

Last updated: 24 February 2019
Justina on 23 February 2019

Category: Side effects

Replies: 1

Last updated: 23 February 2019

Side Effects
by kat73 (Feb 23)

Yes, unfortunately, Gleevec does significantly lighten skin. It has to do with Gleevec's untargeted effect on melanocyte production (through c-KIT, I think). Nothing to be done about

by Justina (Feb 23)

Good afternoon,

I just want to find out, has anyone experienced hypo pigmentation whilst taking Gleevac?
I take 400mg but I can see that I am becoming lighter.

Even my friends have
Category: Side effects

Replies: 1

Last updated: 23 February 2019
Sandra Djureholt on 7 January 2019

Category: Side effects

Replies: 9

Last updated: 17 February 2019

Splenomegaly
by RC Kirk (Feb 17)

And raising babies at the same time!

by Sandra Djureholt (Feb 17)

That's ok :) It's quite a lot of work running a site!

by David Fitz (Feb 16)

Hi Kirk,
Yes that's broken at the moment. We are working to fix / replace.
David

by RC Kirk (Feb 16)

I don't get notifications either. Maybe that feature isn't working?
Good to hear that your spleen isn't bothering you any longer.
Category: Side effects

Replies: 9

Last updated: 17 February 2019
Phuong Phuong on 6 February 2019

Category: Side effects

Replies: 10

Last updated: 9 February 2019

Indigestible, diarrhea - imatinib side effects
by Phuong Phuong (Feb 9)

Hi TJD
your story gives us inspiration and hope. Thank you so much!

by TJD (Feb 8)

Hi ,I actually did the clinical trial for Imatinib in 2001 and also.suffered with diarrhea,along with muscle cramps it was one of the main side effects.I.agree with others about Imodium ,luckily I

by Phuong Phuong (Feb 7)

Hi Ray, my boyfriend is on 400.
So good to hear you are doing fine now. We will try some of your and other member's advices. I hope they will work for my boyfriend.
Ray and all, I

by Phuong Phuong (Feb 7)

Hi Kat, Thank you so much for sharing your thought and experience.
Category: Side effects

Replies: 10

Last updated: 9 February 2019
charissa on 20 January 2019

Category: Side effects

Replies: 2

Last updated: 21 January 2019

Tasigna
by charissa (Jan 21)

Thank you Sid. I hope this forum can help me. I am happy to be part of this org as this will help me tell my stories and talk to someone who has the same condition as mine.

by Sid35 (Jan 21)

Hello Chacha,
I am so sorry to hear that.
Have you checked with Max foundation? I heard they have a help network. Please refer to this link.
https://www.themaxfoundation.org/global/asia-pacific/
I

by charissa (Jan 20)

Hi i am chacha from the philippines, i was diagnosed with CML 2013. before i used gleevec but my doctor change it to tasigna. It is very expensive maybe someone help me who still has tasigna
Category: Side effects

Replies: 2

Last updated: 21 January 2019
Vijay Kumar Verma on 29 December 2018

Category: Side effects

Replies: 2

Last updated: 2 January 2019

Sore gums
by Vijay Kumar Verma (Jan 2)

Hi Greg,
I'm from India,Delhi.vitamins b complex is the answer for sore gums.probiotic may be helpful for diarrhea.

Best wishes

Vijay

by gtboat (Dec 30)

Hi Vijay.
Are you living in Burlington, Ma?
I started the Gleevec 13 days ago and had my firs gum bleed yesterday. A touch of diarrhea this morning. These are my first sign of any side effects

by Vijay Kumar Verma (Dec 29)

Imatinib dose increse from 400 to 600 mg,from 24th dec .sore gums from yesterday.
Category: Side effects

Replies: 2

Last updated: 2 January 2019
Andrewkerry108. on 1 June 2016

Category: Side effects

Replies: 11

Last updated: 23 December 2018

Newbie to CML side effects.
by Kathyp (Dec 23)

Hi , did you look into claiming pip?

by Ben K (Jun 8)

Hi David,
Many thanks for your reply - and yes very mindful of the mental stress too. I have a weekly mindfulness meditation class, a counsellor I see each week and keep in close touch at work

by David Fitz (Jun 7)

Hi Ben,
If that works for you, then great! But be mindful of the mental as well as physical stress CML can put on you and if you have a great employer, they'd much prefer for you to tell them if

by Ben K (Jun 7)

Hi there - I am a newly diagnosed person too and have been on Tasigna for six weeks now. I have had very little time off work - just a couple of half days while I have hospital visits, a day
Category: Side effects

Replies: 11

Last updated: 23 December 2018
Anonymous (not verified) on 17 November 2018

Category: Side effects

Replies: 2

Last updated: 18 November 2018

Imatinib dose reduction
by Anonymous (Nov 18)

Sandy, thanks for your attention. I will discuss it with my doc and wait for the next PCR in order to check if the CMR is similar to the last one. If such happens, then I will reduce the daily dose

by sandy craine (Nov 17)

Hi Silas,
Looking at your molecular response I see no harm in discussing this with your doctor- a trial period to see if a dose reduction would reduce side effects without compromising your

by Anonymous (Nov 17)

Starting from the end of March, I have been taking 400 mg but also facing some side effects (edema and diarrhea).
My q PCR results were MR3 (July) and MR 5,5 (October) and I was wondering if
Category: Side effects

Replies: 2

Last updated: 18 November 2018
AH1 on 9 November 2018

Category: Side effects

Replies: 2

Last updated: 12 November 2018

Gleevec (imanitib) now changed to generic CIPLA
by chrissie (Nov 12)

Ask your haem to prescrobe 4x100mgs daily as the 100mgs are nice and small and easy to swallow. or, as David says, take with a spoonful of yoghurt.
best
Chrissie

by David Fitz (Nov 9)

Generics are the same as the branded medications. Some of the inactive ingredients may be different, which can cause issue with a very small number of people (e.g. someone lactose intolerant when

by AH1 (Nov 9)

Gleevec was recently changed to Sandoz generic imanitib (as Sandoz is owned by Novartis they have the necessary manufacturing capabilities).
Now this has been changed to CIPLA generic. The
Category: Side effects

Replies: 2

Last updated: 12 November 2018
jeff asuncion on 19 September 2018

Category: Side effects

Replies: 3

Last updated: 12 November 2018

Skin rashes caused by tasigna. Can anyone advice me how to get rid of this?
by Naj (Nov 12)

Jeff,
I also had severe skin rash after about 4 months of Tasigna. I took Cetrizine 10mg ( antihistamine tablet) and it worked very well . Just one dose of 10mg was enough for me to stop the rash

by American17 (Nov 11)

Hi,

I also have had a reaction to Nilotinib, I get itchy skin and a rash, I am currently taking antihistamines for this and although it does not stop the symptoms altogether it does help.

by cmljax (Sep 20)

Suggest you go see a dermatologist to get a correct diagnosis of what kind of skin rash you have. Tasigna does cause skin issues/problems, but you need to know which one you have to determine

by jeff asuncion (Sep 19)

I am taking tasigna since 2015 and i am now suffering from a severe skin rash problem. At first, i dont take it so seriously coz as my doctor told me skin rash is one of the side effects of taking
Category: Side effects

Replies: 3

Last updated: 12 November 2018
Samsam on 8 November 2018

Category: Side effects

Replies: 4

Last updated: 9 November 2018

Iron deficiency anemia on dasatinib
by Isla D (Nov 9)

Trey’s blog has some interesting information on anaemia too.
http://treyscml.blogspot.com

by Isla D (Nov 9)

Hi Samsam
I’ve been on Sprycel for over two and a half years (50mg per day for last two years, 100mg and 75mg before that). The side effect that affects my quality of life the most is digestive

by Gitel (Nov 9)

I have been on Dasatinib/ Sprycel for over 6 months. This because of resistance to Gleevac. First 100, now 80. I started with iron deficient anemia and have built up my blood to normal through

by Alaina (Nov 8)

Hi Sam. I have never taken dasatinib so I am sorry I am of no help to your questions. I take Tasigna and wanted to ask how long you were on it before developing resistance?
Category: Side effects

Replies: 4

Last updated: 9 November 2018
Clarannette on 3 November 2018

Category: Side effects

Replies: 1

Last updated: 6 November 2018

Chilblains x CML
by sandy craine (Nov 6)

Hi and welcome,
You need to keep your extremities warm and try to keep the blood flow going- this means massage and exercise might help. Keep warm and try not to expose your skin to extremes of

by Clarannette (Nov 3)

Hello everyone,
New to this forum. :)
I have had CML for about two years and I noticed that I have developed Chilblains. Chilblains is when you are exposed to the cold and/or damp it may
Category: Side effects

Replies: 1

Last updated: 6 November 2018
JacqJohn on 6 June 2018

Category: Side effects

Replies: 9

Last updated: 30 October 2018

Water Retention & Imatinib
by kat73 (Oct 30)

JaqJohn - Your course on Gleevec is familiar to a lot of us, including me. I was alarmed at how completely different I felt, almost immediately, on Gleevec. I, too, was given allopurinol

by Barry Leier (Oct 29)

Hi John,
I've been on Gleevec 400 mg. since 2012. I've had a complete molecular response since 2015. Watch your Creatine and eGFR numbers closely. They can be a sign of kidney issues. Going to stop

by tom888 (Jun 16)

With regard to conservative treatment over drugs ... the following can help. Lift your feet above the height of your heart as you lie down.
Exercise your feet. This helps the fluid get better from

by MartinZA (Jun 14)

Hi John / Jacq
I guess we have become like a walking dispensary! We take one thing to control one problem and this causes another problem that needs a different drug. Ah, the joys of
Category: Side effects

Replies: 9

Last updated: 30 October 2018
Felix on 18 October 2018

Category: Side effects

Replies: 3

Last updated: 24 October 2018

Mouth problems on Imatinib
by David Fitz (Oct 24)

Family dentists, as opposed to hospital dental surgeons, of course don't see as much of the medical spectrum just by virtue of who presents. They're being cautious, which is the right thing.
The

by Felix (Oct 20)

Hi David ,thank you so much for your reply.It is as your sister says between my upper and lower teeth .My dentist has never treated anyone with CML before so I am really hoping she is being over

by David Fitz (Oct 19)

Hi Denise,
I spoke to my sister, who's a dental surgeon, and she said that lines along the inside of the cheek that go from back to front roughly where the two sets of teeth meet are very common in

by Felix (Oct 18)

Hello all,I am a bit worried.A few weeks ago I bit the inside of my cheek when eating I haven’t done that for years and within a few seconds I had bitten the other side .When I looked to see what
Category: Side effects

Replies: 3

Last updated: 24 October 2018
FiremanRock on 17 October 2018

Category: Side effects

Replies: 1

Last updated: 17 October 2018

Sebopsoriasis
by sandy craine (Oct 17)

Hi Andy,
As if you needed yet another complication. If the supplements you were taking before your diagnosis were making a difference to your overall health then keep on with them. The old chestnut

by FiremanRock (Oct 17)

I presented to my GP on the 27th December 2017 and got confirmation on the 9th January this year. Imatinib, all good. However, I also have Vitiligo and unbeknownst to me the three way clash between
Category: Side effects

Replies: 1

Last updated: 17 October 2018
pc on 8 October 2018

Category: Side effects

Replies: 1

Last updated: 10 October 2018

developed varicose veins as a side effect of imatnib
by David Fitz (Oct 10)

Hi there,
Over the years, people have reported varicose veins as an issue with imatinib, so there's a chance it could be related but of course also a chance it's to do with something else. Gender,

by pc (Oct 8)

I was diagnosed with CML in feb 2018.I was put on imatnib since beginning of march 18.. After 6 months on imatnib,my both limbs starts paining heavily and developed rashes. My hematologist told me
Category: Side effects

Replies: 1

Last updated: 10 October 2018
Mike1523 on 24 September 2018

Category: Side effects

Replies: 1

Last updated: 24 September 2018

imatinib side effects
by sandy craine (Sep 24)

Hi Mike and welcome,
You describe a set of side effects that many of us have experienced from imatinib. I am not confident in suggesting you lower your dose as I do not know how your particular

by Mike1523 (Sep 24)

I don't have CML but I am told it is rare but similar to it. I have been diagnosed with a condition called myeloproliferative neoplasm with a PDGRFRB rearrangement. My condition responds very well
Category: Side effects

Replies: 1

Last updated: 24 September 2018
Bmckenna on 14 September 2018

Category: Side effects

Replies: 3

Last updated: 15 September 2018

It's been 2 years on gleevec
by onekayaker (Sep 15)

Barb,
My one on one support survivor contact who has been on gleevec 17 years drinks pickle juice for the cramps. When she travels she gets leg cramps and then she eats mustard packets.

by Bmckenna (Sep 14)

Hi Kirk,
ill talk to my oncologist about this. Thanks SO much for the reply!

by RC Kirk (Sep 14)

Hi Barb,
You might try going back to Sprycel at a low dose if your numbers are good. I'm taking 20mg per day, so far it's been working better than imatinib did.
Kirk

by Bmckenna (Sep 14)

Hi All,
i first posted on here in 2015 after my dx of CML. I was started on sprycel and while my numbers went down well the side effects on bone pain muscle pain joint pain and headaches were
Category: Side effects

Replies: 3

Last updated: 15 September 2018
J. HY Wong on 31 August 2018

Category: Side effects

Replies: 5

Last updated: 3 September 2018

Chest pain (50 mg of Sprycel)
by J. HY Wong (Sep 3)

Just for an update!
The X-ray chest scan turned out very clean, so clean that my doctor gave me weird look for it. I have no idea what was going on, but I am sure 1. the pain sensation was real and

by J. HY Wong (Sep 1)

Thanks scuba, Ian and Kirk for all the information!
I am also suspecting PE, but just worried because the symptoms was a bit off from an usual PE (mainly about feeling strong heart beats). Its

by RC Kirk (Sep 1)

Hi Josiah,
If you haven't seen this post from earlier this year, check it out.
https://www.cmlsupport.org.uk/thread/12264/pressure-chest-when-standing

by ipmaki (Aug 31)

Hi Josiah,
What you describe is something I also experienced when I started taking Sprycel. I had several tests done including a CT scan and an ultrasound, but there was nothing discovered to
Category: Side effects

Replies: 5

Last updated: 3 September 2018
vholly on 29 August 2018

Category: Side effects

Replies: 3

Last updated: 29 August 2018

Sprycel & bruise-like pain
by vholly (Aug 29)

Thanks Gitel & Alex. Happen to have an appointment with haematologist tomorrow so hopefully I’ll get clarity on what’s going on.
Take care,
Victoria.

by Gitel (Aug 29)

You might want to check with your Onc, reporting the cough and the chest pain. Better to check than worry.

by alexmcpee (Aug 29)

Hi Victoria,
Not on Sprycel I am on Nilotinib but did got lots of aches and pains in various places when I first started. I still get the odd twinge now and again but it’s minor. What side is the

by vholly (Aug 29)

Hi all,
I'm in week 2 of Sprycel, having moved from Imatinib due to sub-optimal response. I'm experiencing the same fatigue & I'm hoping that this fades over time. However, I'm also
Category: Side effects

Replies: 3

Last updated: 29 August 2018