You are here

Forum

ishb1 on 12 May 2021

Category: Blood tests

Replies: 10

Last updated: 25 May 2021

Low Neutrophils..off Imatinib...rising BCR
by TimoD (May 25)

Hi Sally

Just out of curiosity, at what dose were you started on nilotinib? I pretty much have the same situation with you and I am currently on 200 mg twice a day nilotinib. My platelets

by Sally Martin (May 21)

Hi, I was diagnosed November 2019. Optimal initial response to imatinib but then within 5 months, my neutrophils had dropped to 0.8. It was March 2020, so peak Covid time and my haematologist was

by Crfharris (May 18)

What are your counts?

by scuba (May 15)

I was off for over three months - but by then I was taking Curcumin in high doses.
Category: Blood tests

Replies: 10

Last updated: 25 May 2021
Lisalater35 on 23 May 2021

Category: Children & young people

Replies: 1

Last updated: 24 May 2021

My new Results what does this mean..
by alexmcpee (May 24)

It is not uncommon to have the e1a2 transcript with the standard b2a2 and b3a2. I have only the 2 b2a2 and b3a2 which code for the P210 version of CML. I think the e1a2 which codes for P190 will

by Lisalater35 (May 23)

e13a2 (b2a2) transcript
0.0682
e14a2 (b3a2) transcript
0.6545
e1a2 transcript
<0.0032 %
My 6 month test
Category: Children & young people

Replies: 1

Last updated: 24 May 2021
ishb1 on 1 May 2021

Category: Children & young people

Replies: 8

Last updated: 23 May 2021

Covid Vaccine and Blood Work
by pianogrl44 (May 23)

I have a quick update too; after vaccine my BCR-ABL dropped from .06 down to .011, could be coincidence but I will take it! .011 is also my lowest result ever. That was after the first

by alexmcpee (May 9)

Ah yeah. As David says don’t get too excited when down and not too worried when up. Little wins are nice and they certainly give you the emotional strength to keep going. The ups not so much.

by kat73 (May 8)

Thanks Alex. Not getting excited about it, just as I steel myself not to despair when I get a number I don't like. I got one other undetectable (on my cancerversary actually) a

by alexmcpee (May 4)

Wow amazing news. Wouldn't it be amazing if it inadvertedly cured our CML :-). I am guessing this is a coinicidence and nothing more. But congrats Kat. One day maybe for a lot of us.
Category: Children & young people

Replies: 8

Last updated: 23 May 2021
JPD on 6 September 2020

Category: Uncategorised

Replies: 13

Last updated: 23 May 2021

Slightly high CBC -- freaking out.
by kat73 (May 23)

Yes, those are two good things to focus on. You're in the safe zone, as you know, on the PCR. It is hard to not be annoyed, I know. It's a miserable game and you want to

by JohnFromChicago (May 21)

My PCR is back up to .07 glad I am still in MMR but annoying to still be playing this game after 6 years wish I could just be .00X and sit back and forget about it. Oh well could be worse I suppose

by JohnFromChicago (May 15)

Glad to hear your are still doing well JP I remember you from the old LLS group days. Im still a turtle here in PCR I float around .02-.04. I recently had a similar CBC...lowest ever for me

by alexmcpee (Sep 19)

Fantastic mate,
Perfectly normal to worry when it happens to yourself you freak out!! When it happens to another CMLer you see things more logically. This is what happens when we think with our
Category: Uncategorised

Replies: 13

Last updated: 23 May 2021
Jmbnccyn on 13 May 2021

Category: About CML

Replies: 13

Last updated: 22 May 2021

cml overall survival data?
by Sunny (May 22)

Totally agree with you Eva. Unfortunately not everyone can subscribe to this tenet, that we are the captain of our own ship.
But by the same token, it is also true that sometimes life does throw us

by EvaH (May 22)

Survival data and survival analysis is a rather specialised branch of mathematics and frankly CML may be too rare to have enough numbers to perform this analysis.
At 20 years out from diagnosis,

by alexmcpee (May 20)

Cheers David,
That makes sense. I don’t know why that number has always played on my mind. I guess seeing so many people diagnosed close to the 100% and a few over like yourself made me feel

by TimoD (May 20)

Hi!
Thanks everybody for the support!
I agree, PCR results at my level can be inaccurate and fluctuate a great deal. I currently have the trend and take comfort in it. Hopefully my myelosuppression
Category: About CML

Replies: 13

Last updated: 22 May 2021
micheller on 12 June 2017

Category: Uncategorised

Replies: 1

Last updated: 20 May 2021

glivec
by Sd (May 20)

Hi,
I realize your text was written 4 years ago, but I have recently developed nighttime anxiety and panic attacks. Are you still having them? When? What have you done to resolve them? I am

by micheller (Jun 12)

Anyone developed anxiety & panic attacks been on glivec five years
Category: Uncategorised

Replies: 1

Last updated: 20 May 2021
SS86 on 16 May 2021

Category: Side effects

Replies: 1

Last updated: 19 May 2021

Burning sensation on breast area
by ColoradoGuy (May 19)

If it persists I would get it checked out. I have had strange sharp sensations in my big toe. They don't last long and I honestly forget about it until other people ask about strange

by SS86 (May 16)

Hi,
My wife is having a very mild burning sensation around her breasts. It initially started with a pain on the left side and then it turned into a burning sensation on the left side. Now she has
Category: Side effects

Replies: 1

Last updated: 19 May 2021
bendicco on 14 May 2021

Category: Drug-drug interactions

Replies: 3

Last updated: 19 May 2021

Imatinib and Tamoxifen( or similar) interactions( POST MOSTLY FOR WOMEN)
by Christine R (May 19)

Hi
Hopefully your oncologist will research any interactions between drugs but this is not always the case and you may need to do that research yourself or push for it. I was told i could not

by bendicco (May 17)

Hi, Yes it is Stage 0, INSITU. The surgeon was pleased to have gotten clean margins. I am waiting for appointment to now see a breast cancer oncologist to determine what if any further treatment is

by sandy craine (May 16)

Hi, do you mean you have a diagnosis of DCIS (ductal carcinoma insitu)? If you have had a lumpectomy for this condition, I am not sure if you need chemotherapy such as Tamoxifen as well. There is a

by bendicco (May 14)

Hi, Recently had a lumpectomy for cancerous calcifications. I have been taking Gleevec (Imatinib) for 3 years. The drug Tamoxifen or similar may be prescribed for me to take as a precautionary
Category: Drug-drug interactions

Replies: 3

Last updated: 19 May 2021
logisnews on 2 June 2019

Category: Side effects

Replies: 7

Last updated: 19 May 2021

Gleevec Side-effects versus Sprycell, why would someone continue with gleevec?
by Wendy Turner (May 19)

I've been on Imatanib (generic) for 18 months and it seems to suit me. I had initial side affects for a couple of months. I do make sure I drink at least 2 litres of water a day, do

by Julia.K (May 18)

Hi!!!
I love Glivec, this was the best drug for me but it has not been refunded in Poland since 2014. I was switched to generic imatinib and lost MMR, now I am on sprycel, only after 2 months of

by LynnA (Jun 4)

I took Gleevec for 16 years. The first 6 months were horrible (mostly G.I. symptoms), but for quite awhile there was no other choice. When Sprycell was available, since I flirt with high blood

by Mixail (Jun 3)

I have been on 400mg daily for a 1 year. I was very sick for the first 6 weeks then most of the side effects subsided. Now the occasional diarrhea and nausea. Other than that all is going well.
Category: Side effects

Replies: 7

Last updated: 19 May 2021
alexmcpee on 15 September 2020

Category: Side effects

Replies: 43

Last updated: 18 May 2021

Fatigue fatigue fatigue...
by Busaboy (May 18)

So for any and everyone battling fatigue, lethargy, resulting apathy, and general grumpiness as a result-whatever- I've found an absolute game changer. I mean a return to normalcy or better.

by Busaboy (May 18)

So for any and everyone battling fatigue, lethargy, resulting apathy, and general grumpiness as a result-whatever- I've found an absolute game changer. I mean a return to normalcy or better.

by Tel (May 16)

Hi Sd,
I've just signed up to Untire. It looks promising as a guide/support and research into Cancer Related Fatigue (CRF). Early days yet but I'll update the chat with progress.
I guess the

by Mr_T1987 (May 15)

Afternoon Alex.
I take Nilotinib too and the fatigue is something that I struggle with daily. I always feel like I can fall asleep at a moment's notice, no matter what I've been doing.
Not sure if
Category: Side effects

Replies: 43

Last updated: 18 May 2021
Chuckster on 12 March 2018

Category: Side effects

Replies: 29

Last updated: 15 May 2021

OK! Just took my first 100MG Sprycel Pill today
by Maddie (May 15)

My counts
May. Undetectable
March. .0187. 3.72
Feb. .0279. 3.55
surgery a week off meds
Nov. .0055. 4.26
Sept.

by Maddie (May 11)

Hello. I hope this is real but my test came back today BCR ABL NON DETECTED
especially since I am also on omeprazole

by Maddie (Apr 24)

Hello all I have been away for a while. Had to have lung surgery at Xmas but ok now. Wanted to check in to see if anyone is having skin issues
i have had a couple of squamous cell skin

by sandy craine (Jan 9)

Please be aware that this forum is accessible to view by anyone who cares to, i.e it is publicly available. If you want to privately contact another member of this forum you can email them directly
Category: Side effects

Replies: 29

Last updated: 15 May 2021
David Fitz on 14 May 2021

Category: Treating CML

Replies: 2

Last updated: 14 May 2021

Models of care for chronic myeloid leukemia patients during the COVID‐19 pandemic
by David Fitz (May 14)

My consults are on the phone these days - no video. I know my consultant very well at this stage, so it works OK but I can imagine a video link being very beneficial. Steve O'Brien spoke the

by alexmcpee (May 14)

Cheers David.
Myself personally I don’t mind the telephone consultations rather than a visit to the hospital which is always anxiety inducing I can now do that at home lol. The one thing you

by David Fitz (May 14)

I thought a few people here might find this interesting ... it's a study (I am one of the authors) about how people have been treated for CML during the pandemic, and what people's
Category: Treating CML

Replies: 2

Last updated: 14 May 2021
Keerthi Pathipati on 14 May 2021

Category: Organising your life

Replies: 2

Last updated: 14 May 2021

CML vs covid 19 mutant strain
by scuba (May 14)

Hi Keerthi - The most important thing you can do is to make sure your vitamin D level is above 50 ng/ml (requires blood test). Supplementing with 5,000 IU's vitamin D3 (converts to D in the body

by Mukesh kumar (May 14)

Hello mam I'm Mukesh also from India...imatinib resistant within 1 year currently on tasigna 200×4 a day.... recently I met my doctor and told him the same situation as you are describing it...he

by Keerthi Pathipati (May 14)

Hello... Hope everyone is safe at their places...I am keerthi pathipati, 19 yr old from india.. patient of cml since 2011...i've been using imatinib 300mg for 8 years.. Later found that i've got
Category: Organising your life

Replies: 2

Last updated: 14 May 2021
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