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sandy craine on 13 May 2021

Category: Other conditions

Replies: 0

Last updated: 13 May 2021

iCMLf Conversation: CML and COVID-19. What do we know so far?
by sandy craine (May 13)

May 28th at 7.00 Eastern Standard Time / 13.00 Central European Time
Join our two experts to get the latest update on the iCMLf COVID-19 and CML data and on patient perceptions on COVID-19 vaccines
Category: Other conditions

Replies: 0

Last updated: 13 May 2021
Ontasigna on 4 May 2021

Category: Treating CML

Replies: 3

Last updated: 12 May 2021

Diclofenac 50mg / 3 doses
by hannibellemo (May 12)

Hi, ontasigna! I did a search on drugs.com for drug interactions between the two, of course this search doesn't take into account any other drugs you may be taking. You can enter those and see

by Ontasigna (May 7)

Thanks for the details. However, i still have severe joint and muscle pain since i stopped diclofenac.
Does diclofenac effects nilotinib efficacy?

by johnw1001 (May 4)

Hi,
Most medics are very reluctant on prescribing Diclofenac for long term use because of the risk of stomach bleeds so if you are taking it without the use of a proton pump inhibitor I would advise

by Ontasigna (May 4)

Hi All,
I took diclogenac 50 mg / 3 doses with 12 hrs apart one hour after my Nilotinib dose.
I am having bad joint pain/muscle pain and fatigue after stopping Diclofenac.
I am worried as the
Category: Treating CML

Replies: 3

Last updated: 12 May 2021
Crfharris on 6 May 2021

Category: Children & young people

Replies: 14

Last updated: 11 May 2021

Antigen Negative
by Christine R (May 11)

That is great news . You can relax a bit now and see your family.

by Crfharris (May 11)

My COVID Vaccine Response Screen came back positive. The shots did produce antibodies.
I appreciate this Forum so much in that I would have assumed the pharmacy test was the correct one. Thank you

by Crfharris (May 9)

Good information. I will share the results of the antibody screen when I get them.
Thanks.

by chrissie (May 9)

According to an immunologist whose webinar on CML and Covid Vaccines I watched via icMLf on April 6th it is possible to have immunity after the vaccine without having antibodies. It's all to do
Category: Children & young people

Replies: 14

Last updated: 11 May 2021
KingBurger on 5 May 2021

Category: Uncategorised

Replies: 4

Last updated: 11 May 2021

Appreciate some thoughts
by ColoradoGuy (May 11)

That sounds like a good approach. I would say that unless it goes over 1.0 I wouldn't rush to cycle through TKI's. This may be a slight plateau.

by KingBurger (May 8)

Thanks both. I spoke to my doc yesterday and we are going to wait 2 months for another blood draw - so no change in TKIs yet. Fingers crossed things start to go down!

by Buzzm1 (May 6)

Kingburger, being under 1.0, the point at which CML doesn't present any real danger to our health is not a bad place to be; plateauing, or becoming rangebound at low CML levels isn't at all

by Nimbus2 (May 5)

My situation is somewhat similar. I was imatinib-resistant and shifted to dasatinib. I just achieved MMR and then lost it again. I have been waiting four months for my latest result. I was recruited
Category: Uncategorised

Replies: 4

Last updated: 11 May 2021
pianogrl44 on 5 May 2021

Category: Treating CML

Replies: 4

Last updated: 11 May 2021

Skin depigmentation w Imatinib
by sbp03 (May 11)

Hypopigmentation is a relatively commom side effect caused by TKI (see link below). In my case, it came together with hyperpigmentation with melasma and melanonychia, supposedly because the

by PhilipDavid (May 10)

Hi. I was diagnosed in February 2015. Been in imatinib since April 2015. It does interfere with your skin colour. I look like Dracula - my skin is so white now and you can

by kat73 (May 8)

Yes, it interferes with melanocytes, which produce pigment. I forget which kinase it hits to do this - c-KIT? PDGFR? Doesn't matter much. You can usually spot people on

by johnw1001 (May 7)

Have a look a few posts back at a recent discussion on Forum dated 18 April 2021 titled "Increased skin sensitivity to the sun" where the subject is referred to.What you refer to is not
Category: Treating CML

Replies: 4

Last updated: 11 May 2021
GordonMcD on 8 May 2021

Category: Side effects

Replies: 6

Last updated: 10 May 2021

Nausea an Imatinib
by AlastairC (May 10)

Hi I agree with everyone that you need to find a routine which works for you. The first criterion is that you do it at a time when you are going to remember to take the meds - the main factor likely

by Lisalater35 (May 9)

I only get nauseated when I eat before take pill. I find taking on empty stomach is better for me. I asked the Dr if that was ok, and he said whatever works. I have been on Imatinib for 5 months I

by GordonMcD (May 9)

Thank you so much everyone - this is very reassuring and some great ideas to try. Thank you.

by EvaH (May 9)

Yes, very common.
Many of us take it at night before bedtime so that we are alseep if and when nausea comes.
Náusea is much more common for me if i take it on an empty stomach or without having
Category: Side effects

Replies: 6

Last updated: 10 May 2021
TimoD on 3 May 2021

Category: Uncategorised

Replies: 3

Last updated: 10 May 2021

Greetings!
by TimoD (May 10)

Good morning!
Does anybody have some additional insight in regards to the questions above?

Thanks!
Timo

by TimoD (May 8)

Hi Kirk!
Many thanks for your reply!
I have been eager in taking Vitamin D for several years and after diagnosis I increased my intake twofold. Vitamin D level currently should be between 70-80 ng.

by RC Kirk (May 7)

Hello Timo,
Glad you found us here!
Sorry to say but I don't have personal experience to share that might help you. My early treatment was fairly uneventful, although I did have three bone

by TimoD (May 3)

Hello to all !
I have been following this forum for some time now. I am a 31 year old guy from a small European country - Estonia (part of EU). I have great access to treatment and monitoring, no
Category: Uncategorised

Replies: 3

Last updated: 10 May 2021
MANNI OBEROI on 8 May 2021

Category: Reproductive health

Replies: 1

Last updated: 22 September 2022

COVID MEDICINES INTERACTION
by alexmcpee (May 8)

What have you been prescribed?

by MANNI OBEROI (May 8)

I am ramandep....cml patient from last 2 years....now I have a COVID fever....the medicines written by the doctor for COVID have drud interation with imatinib what can I do.....I have to stop taking
Category: Reproductive health

Replies: 1

Last updated: 22 September 2022
philmc on 18 April 2021

Category: Uncategorised

Replies: 5

Last updated: 8 May 2021

Increased skin sensitivity to the sun
by kat73 (May 8)

TKIs in general affect melanocyte production. Makes it very hard to get a tan at all, or an even tan. But we all have to give up "getting a tan" anyway, because of what we know

by DawnD (May 7)

Does anyone know why I can not tan or burn at all on Sprycel? I live in South Florida. It’s so weird to me! I am so pale. Labs normal.

by EvaH (May 5)

Yip i burn easier, ive more freckles now then ever and some of those dark patches john mentioned have arrived.
I do my best to cover up completely but I'm outdoorsy and i live in year round sun. It

by philmc (Apr 19)

Thanks for the advice John.
Phil
Category: Uncategorised

Replies: 5

Last updated: 8 May 2021
Ray Sell on 7 May 2021

Category: Uncategorised

Replies: 6

Last updated: 7 May 2021

switiching from imatinib to bosutinib
by Ray Sell (May 7)

I agree Alex. This was a new Dr yesterday and I asked what the Oncology gene, or mutation was and he didn't know. I'm in US and use the VAMC. Its the Medical facility for

by alexmcpee (May 7)

No worries. Yeah normally an analysis is done to see what mutation if any is present before deciding on what TKI to give. Maybe some docs do this blindly I don’t know.

by Ray Sell (May 7)

Sandy, thank you. Think I’ll give it a try A wonderful day to you Ray

by sandy craine (May 7)

Hi Ray,
Yes, I know someone who had sub-optimal results on 4 out of the 5 available TKis (including ponatinib) and as a last resort tried bosutinib. She responded very well to this TKI and is still
Category: Uncategorised

Replies: 6

Last updated: 7 May 2021
Mr_T1987 on 6 May 2021

Category: Uncategorised

Replies: 2

Last updated: 7 May 2021

Skin Irritation/conditions
by KingBurger (May 7)

Also on Nilotinib 2x per day. Had the exact same thing. Went to the dermatologist and they gave me a topical steroid cream. Works like a charm and I use it any time I see something starting up.

by Naj (May 7)

Hi Jay,

I have been on Nilotinib (Tasigna) 300mg twice a day since Jan 2017 . After about 2 months on Tasigna, I had severe itching on my back, under arm, parts of stomach.. I took

by Mr_T1987 (May 6)

Evening all.
Currently taking Nilotinib, 300mg twice daily. Over the last few week, I've started to become very itchy in several areas. Mainly legs and stomach but not exclusively these areas.
Category: Uncategorised

Replies: 2

Last updated: 7 May 2021
Sd on 6 May 2021

Category: Side effects

Replies: 0

Last updated: 6 May 2021

Some suggestions
by Sd (May 6)

So I have been battling night time anxiety, hot flashes, abdominal cramps and heart palpitations with imatinib (been on it 20 months with good results). Some things I am learning about management of
Category: Side effects

Replies: 0

Last updated: 6 May 2021
saifur360 on 7 April 2021

Category: Drug-drug interactions

Replies: 3

Last updated: 5 May 2021

If I change my TKI brand, is it any issue for my blood count?
by Nimbus2 (May 5)

Indeed, there are doctors who considers that the patient complaints are psychological. I suffered quite badly from taking Accord imatinib.

by EvaH (May 5)

Imantanib works no matter the brand.
I took veenat for a while in Asia and experienced more frequent nausea after taking my dose (i get nausea sometimes on my regular sandoz imatanib)
Some docs will

by alexmcpee (Apr 7)

As far as I am aware Generic Imatinib is the same ingredient (patent) so you should have zero changes in terms of response. But I had seen some people get other side effects when switching between

by saifur360 (Apr 7)

Since January 2017 I am taking Imatinib ( Veenat 400), brand name- Natco. Now if I want to change my Imatinib brand, that's name Imatinib (Imat 400) brand name- Zydus. Is it any large issue for
Category: Drug-drug interactions

Replies: 3

Last updated: 5 May 2021
daniellep on 19 April 2021

Category: Side effects

Replies: 11

Last updated: 5 May 2021

High platelets
by EvaH (May 5)

Same happened to me, the white cells came down immediately and platlets continued to rise. It was quite scary at the time, and this was right at the start when i was on lyria rather than Imantanib.

by daniellep (Apr 28)

Thanks Sandy. Much appreciated.

by sandy craine (Apr 28)

Hi,
If your platelets are not responding to imatinib then it makes sense to move you to a 2nd Generation TKI such as nilotinib. I assume (if you are in the UK) the dose will be 800mg per day - @

by daniellep (Apr 28)

Hi. I was diagnosed last month on March 24th. I do not know if they have tested my PCR - it has never been mentioned to me. My platelets went up to 1000 after the hydroxi chemo followed by 3 weeks
Category: Side effects

Replies: 11

Last updated: 5 May 2021
Lisalater35 on 2 May 2021

Category: Uncategorised

Replies: 11

Last updated: 4 May 2021

Should I worry?
by Lisalater35 (May 4)

Thank you all so much. Scuba that helps me out a lot. I try to stay clear of internet this is one place I come to feel better....

by scuba (May 3)

Very nice summary Kat!
Lisa - Early in disease treatment (first 6-12 months), one of the most important numbers to monitor is FISH, which measures actual CML cells under the microscope and is the

by kat73 (May 3)

I think everyone has different coping styles ingrained in them. Some people react to the diagnosis by deep diving into every scientific paper they can access on the internet. Others

by An (May 3)

You are not underestimating the disease,enjoy your grand daughter ,you won't get these moments in life again and worrying is not going to change anything,sending positive vibes your way for the next
Category: Uncategorised

Replies: 11

Last updated: 4 May 2021
sherog1 on 30 April 2021

Category: Uncategorised

Replies: 2

Last updated: 3 May 2021

Blood tests after covid vaccine
by sherog1 (May 3)

Thanks Ian for your reply. There appears to be a couple of other threads seemingly others have experienced low platelets as long as 2 months following Vaccination. In retrospect I think he should

by ipmaki (Apr 30)

Hi Sheila,
My platelet numbers pre- and post-vaccine were relatively similar in the range of 95 to 105. That said, my numbers regularly fluctuate between 90 and 110 because of dasatinib. I wouldn

by sherog1 (Apr 30)

Hi.
My husband , through imatinid and dasatinib has maintained a platelet count around 120. Bloods taken post first vaccine injection show platelets at 88.
Has anyone experienced blood count changes
Category: Uncategorised

Replies: 2

Last updated: 3 May 2021
KingBurger on 8 April 2021

Category: Uncategorised

Replies: 10

Last updated: 2 May 2021

Should I be concerned?
by alexmcpee (May 2)

Blimey thats such a lot of money. I do feel sorry for the US health system. We are so very lucky here in the UK and shouldn’t complain but it’s all relative isn’t it.

by KingBurger (May 1)

I guess I should consider myself lucky on that front. I’m also in the States and it takes about 10 days to get results back. Thankfully the cost is covered by insurance!

by EvaH (May 1)

Sidenote on waiting times and cost

I have a reimbursement based insurance and its costs over 1000usd per bcr/abl and full blood cout where i currently live. It takes 2-4 weeks to get the

by KingBurger (May 1)

Thanks Alex for the response! Just particularly nervous this time around with the rise I saw in the last draw. Fingers crossed!
Category: Uncategorised

Replies: 10

Last updated: 2 May 2021
jab on 30 April 2021

Category: Blood tests

Replies: 2

Last updated: 1 May 2021

Has anyone been in remission and then CML detected while on Sprycel?
by jab (May 1)

your comment has lowered my anxiety. Thank you.

by alexmcpee (Apr 30)

Noise of the test. Anything below 0.01 is clinically insignificant. Many people at your amazing level have rises on paper but that’s all they are. Not significance whatsoever. If you rose from

by jab (Apr 30)

I had been in remission (not detectable) since December 2019, my most recent blood work last week shows a slight increase, very slight, 1/1000 of a point. Doc was claiming that I was a miracle
Category: Blood tests

Replies: 2

Last updated: 1 May 2021
Faith_05 on 29 April 2021

Category: Side effects

Replies: 5

Last updated: 30 April 2021

Dizziness
by Faith_05 (Apr 30)

Thank you Chrissie again!!
I watched a video on youtube and I tried it!!!
From the first time it worked on you?
Faidra

by chrissie (Apr 30)

HI again
No I tried it myself - and when it worked I phoned and told my GP. I knew it wouldn't do any harm at all and, tbh, I was very sceptical so what a surprise to me when it worked.
Good

by chrissie (Apr 30)

HI again
No I tried it myself - and when it worked I phoned and told my GP. I knew it wouldn't do any harm at all and, tbh, I was very sceptical so what a surprise to me when it worked.
Good

by Felix (Apr 29)

Hi, I started with slight dizzy spells ,mentioned this to my doctor so she added a few more tests to my normal round of blood tests and I was found to be very very low In Vitamin B12 .Started
Category: Side effects

Replies: 5

Last updated: 30 April 2021
pianogrl44 on 28 April 2021

Category: Treating CML

Replies: 4

Last updated: 30 April 2021

Imatinib Resistance
by An (Apr 30)

My husband recently had a rise from 0.03 to 0.05 and we were really worries but the next one it was back to 0.03.I think some fluctuations are normal ,as my bil said not much difference in 5 in 10,

by pianogrl44 (Apr 30)

Thanks so much Sally and Alex. It’s nice to hear a couple other perspectives and hopefully my results are just in line with the nature of CML and it’s just one of those normal

by Sally Martin (Apr 29)

Hi, I’m on nilotinib having switched last Summer from imatinib, which was causing my Neutrophils to dip too low. I achieved a major molecular response very quickly but actually my last reading

by alexmcpee (Apr 29)

Personally I just see this as a blip nothing more. Wouldn’t worry about the panels they’re all in range. It prob means your body is working more as it should rather at the lower end of
Category: Treating CML

Replies: 4

Last updated: 30 April 2021