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Ray Sell on 9 September 2020

Category: Treating CML

Replies: 32

Last updated: 17 December 2020

Switiching from Imatinib to sprycel
by argearge (Dec 17)

An update. Just my results back. After 30 months 0,13% IS with imatinib 600. No need yet to switch to dasatinib. My onc wants to try dasatinib 50mg if the imatinib will fail. 3 months ago my results

by RC Kirk (Nov 17)

It's been nearly three years ago, so my memories aren't too fresh. IIRC it was only a few days before I noticed the irregular beats. I started at 100mg/day, then went down to 50

by Ray Sell (Nov 16)

RC Kirk
It took 11 days from starting to start giving me IHR. I felt lots better on Sprycel. Did things because I wanted to, not because I had to.
How long did it take for yours to

by RC Kirk (Nov 16)

Hi Ray,
Your experience changing from imatinib to dasatinib is very similar to mine. I experienced irregular heartbeats when starting dasatinib. The worst was when I had an episode of
Category: Treating CML

Replies: 32

Last updated: 17 December 2020
Mari_lyn on 10 November 2020

Category: Uncategorised

Replies: 31

Last updated: 16 December 2020

Advice on 3 months mark /new here
by Mari_lyn (Dec 16)

Thank you so much Sandy for the helpful info, I will definitely order some extra supplements. And with K2 combined is probably better, I read. Hopefully they’ll still deliver in time

by sandy craine (Dec 14)

Hi Marilyn,
I take a D3 supplement that includes K2 in a 'correct' percentage. K2 is recommended to ensure that D3 - at higher doses than is officially recommended - does not leach calcium

by Mari_lyn (Dec 10)

Thank you Sandy for your kind reply.
Yes, the measurement here is the same as in the UK: nmol/l. My GP didn’t even know that but I’ve researched it.
My level of

by sandy craine (Dec 9)

Hi Marilyn
"....Also, short update: Had my appointment. The haematologist consulted with one of the best CML experts here, and they advised me to go on Sprycel 100mg now. I've discussed the
Category: Uncategorised

Replies: 31

Last updated: 16 December 2020
VinayJagnani on 14 December 2020

Category: Food & fitness

Replies: 2

Last updated: 16 December 2020

CML care with Wheat Grass and Yoga
by Vikram (Dec 16)

Hii vinay..
I try wheat grass yoga and giloy (Tinospora cordifolia) neem tree wala.. Fresh.....

by alexmcpee (Dec 14)

Interesting.
I started practicing mindfulness meditation when I was diagnosed and it’s changed my life. The form where you focus on your breathe. Been doing it for 3 years pretty much daily

by VinayJagnani (Dec 14)

Hello All,
I was diagnosed with CML around 2 years and 3 months and I have already received 2 reports with Not Detected till now. I am on Imatinib 400 for now.
To support my medicine for CML, I
Category: Food & fitness

Replies: 2

Last updated: 16 December 2020
Nshah on 13 December 2020

Category: Blood tests

Replies: 2

Last updated: 15 December 2020

Nucleated RBC
by Nshah (Dec 15)

Thanks Sandy😊

by sandy craine (Dec 14)

It may indicate that your bone marrow is under pressure. See excerpt from Wikipedia below. It might indicate in your case that you have a low red cell count with can indicate anaemia?
Sandy
A

by Nshah (Dec 13)

Hi everyone
Hop you all are doing great in these tough times.
I have been on imatinib for past 18 months.From last two cbc I am having nucleated RBC.I wanted to ask if anybody have had
Category: Blood tests

Replies: 2

Last updated: 15 December 2020
David787 on 12 December 2020

Category: Side effects

Replies: 6

Last updated: 15 December 2020

Generic TKIs
by David787 (Dec 15)

Hello again Martin,
Many thanks for the detail. The generic names are different here in the UK, I think, but I am sure that all you say applies.
It's all fairly new for me and I shall see how I

by MartinZA (Dec 15)

Hi David
My doctor said that there is no difference in side effects from the active ingredient (i.e. the imatinib) but explained that the different companies use different binding agents and that

by David787 (Dec 15)

Thanks for yours Martin,
I have also noticed a difference between the two that I have been given.
Strange how my haematologist insisted yesterday that there was no difference between the generics

by MartinZA (Dec 15)

Hi David
I concur with Stephen completely - I have been on Accord, Imavec and Mivesta as generic imatinib. Accord was absolutely terrible and gave me severe heartburn and other gastric problems too
Category: Side effects

Replies: 6

Last updated: 15 December 2020
Lisalater35 on 12 December 2020

Category: Blood tests

Replies: 14

Last updated: 14 December 2020

Just diagnosed with cml
by Lisalater35 (Dec 14)

You all are so great. It definitely is scary but I am not alone. I met some wonderful people to help me through this. I Am actually talking to the Dr who invented Gleevics and he also has made me

by Faith_05 (Dec 14)

Hello Lisa and I'm sorry for your diagnosis.
Obviously you caught it too early!!I was diagnosed in March 2020 and also had low WBC. It was 20,000 and my platelets were 305,000. I'm taking

by koralia.pappi (Dec 13)

Hi Lisa,
Don't freakout about low WBC, it's actually a good sign, means that you got it early. Indeed as Alex said, most CMLers get a DX on high numbers, but I also found out with relatively low WBC

by Lisalater35 (Dec 13)

Thanks Richard,
highest my platelets ever got was 670, which btw when I got my BMB the platelets had dropped to 520. WBC highest was 21,000 and dropped to 15,000. My blood work 3 yrs ago showed
Category: Blood tests

Replies: 14

Last updated: 14 December 2020
RobUK on 13 December 2020

Category: Side effects

Replies: 2

Last updated: 13 December 2020

Newbie, Imatinib and pain relief
by RobUK (Dec 13)

Thanks for taking the time to reply.
Having read lots of posts here, I had a bath. Can barely get in and out due to left leg pain.
I think I will take some pain relief. Spent all afternoon on BNF

by AlastairC (Dec 13)

Hi Rob, if this pain feels like it is in the bone, then it likely is an imatinib side effect.
A ht bath or a hot water bottle might help. When I started imatinib 13 years ago (aged 50) I had fairly

by RobUK (Dec 13)

Hello all,
I was diagnosed CML a couple of weeks ago and started Imatinib 400 on Friday, so I've had just 2 tablets.
All night I have had a fairly intense pain in my upper left leg that is
Category: Side effects

Replies: 2

Last updated: 13 December 2020
Lori83 on 12 December 2020

Category: About CML

Replies: 6

Last updated: 12 December 2020

CML
by Lori83 (Dec 12)

Wednesday I will find out if the 50 mg is working so we will see

by scuba (Dec 12)

It's interesting you were started on 50 mg dasatnib. The old standard was 100 mg which caused worse side effects in addition to headaches.
Your headaches will fade away as your body adjusts to

by Lori83 (Dec 12)

Thank u mike

by Lori83 (Dec 12)

Thank u 🙏🏼 Alex
Category: About CML

Replies: 6

Last updated: 12 December 2020
skiinglaketahoe on 12 December 2020

Category: Uncategorised

Replies: 2

Last updated: 12 December 2020

Covid Vaccination
by Wendy Turner (Dec 12)

That's great news, thanks so much for posting.

Wendy

by alexmcpee (Dec 12)

Hey Susan
Brilliant news that you got it and that we are fine to do so as I am sure many will have anxiety about receiving it.
Alex

by skiinglaketahoe (Dec 12)

Good Morning
My name is Susan and I haven't posted in absolutely ages. To be brief, I was dx with CML in March 2005 and had a stem cell transplant in October 2007.
I was just posting to say that
Category: Uncategorised

Replies: 2

Last updated: 12 December 2020
Zzyzxuk on 25 November 2020

Category: Uncategorised

Replies: 8

Last updated: 12 December 2020

CML Journey: Week 8 - WOW!!!! You weren't kidding!!!
by Lori83 (Dec 12)

Yes the headaches I’m getting I just in my 3 weeks starting my 1st day felt so bad IIke if I had the flu. Then I started getting better days just now I’m getting headaches and my bones

by alexmcpee (Dec 11)

Thank you Patch! ☺️

by Patch (Dec 8)

Yes, congrats Alex thats fantastic news.

by alexmcpee (Dec 8)

Thank you Sally sorry I just saw your reply.
Alex
Category: Uncategorised

Replies: 8

Last updated: 12 December 2020
alexmcpee on 10 December 2020

Category: Uncategorised

Replies: 8

Last updated: 12 December 2020

Flu vaccination
by alexmcpee (Dec 12)

Haha cheers Alastair it certainly doesn’t feel like a prime lol. Maybe 25 lol. But thank you mate

by AlastairC (Dec 11)

Alex, you are not "getting on". At 40 you are in your prime. As am I at 63.
Best wishes
Alastair

by alexmcpee (Dec 11)

Thank you John,
I will take them up on it. Just wanted to be 100% sure I should be getting it as I have never had one to date. I am getting on at 40 so I suppose its wise :-)
Hope all is well with

by johnw1001 (Dec 10)

Hi All,
I have for many years always taken this as a precautionary measure and with good fortune have never been affected by the influenza in recent years. I would say if you qualify on the
Category: Uncategorised

Replies: 8

Last updated: 12 December 2020
Vikram on 12 December 2020

Category: Uncategorised

Replies: 1

Last updated: 12 December 2020

Corona vaccine research help cancer research?
by alexmcpee (Dec 12)

I don’t think there is any correlation. I do know that some cancer studies have actually been put on hold because of the pandemic.
But I will say is when money and effort is no question I am

by Vikram (Dec 12)

corona vaccine research help cancer research??

Boost Future cancer reserch??

Cure cancer near future??
Only question...
Finger cross...
Category: Uncategorised

Replies: 1

Last updated: 12 December 2020
Chuckster on 25 April 2018

Category: Side effects

Replies: 8

Last updated: 12 December 2020

Anyone experience weight loss on Sprycel?
by Lori83 (Dec 12)

My name is Anna I’m 37 I just got diagnosed with CML in a 50 spryce A month ago I was in the hospital for a week and lost 10 pounds due to all the blood they were taking and eating

by Lori83 (Dec 12)

Hello my name Anna I just recent got diagnosed with CML and I been taking sprycel. I totally agree with u about less alcohol it does make a big difference. Do y’all get bad headaches they put

by Chuckster (Aug 3)

Hi.
In my case, it was definitely the HIGHER dosages of Sprycel causing many side effects including the loss of appetite etc.
Since my dosages were lowered from 100mg then 80mg

by deonlee (Aug 3)

Hi everyone!
Really glad I found this forum!
I also have been struggling with loss of appetite recently. Some time ago after about 3 months of Imatinib, my blood counts were dropping too much so I
Category: Side effects

Replies: 8

Last updated: 12 December 2020
vonnie on 14 November 2020

Category: Uncategorised

Replies: 2

Last updated: 9 December 2020

fish intolerance
by johnw1001 (Dec 9)

Hi Vonnie,
I dont know how long you have been taking imatinib but in terms of the side effect profile and you can do this by looking at the product literature that accompanies your medicines, it is

by David Fitz (Nov 17)

Vonnie,
Not one I've heard of before - it might be a more mundane situation where the fish was past its best.
David.

by vonnie (Nov 14)

hi two weeks ago ate canned tuna and experienced nausea and loose stools and intestinal discomfort and wondering the next day,yesterday i ate breaded sole and today have suffered the same problems
Category: Uncategorised

Replies: 2

Last updated: 9 December 2020
Chuckster on 9 March 2018

Category: Side effects

Replies: 22

Last updated: 9 December 2020

Initial side Effects of Sprycel?
by ThomasS (Dec 9)

I had terrible side effects on 100mg. Finally talked my dr in to lowering to 50mg and most of the side effects went away. Had bad headaches, leg cramps, terrible insomnia. The insomnia and vivid

by geneletourneau (Dec 5)

I am a 73 year old newbie ti CML myself, having just completed my first 13 days of Sprycel 100 mg. For the first seven or eight days I got some fairly severe headaches that pretty much put me down

by jan0080 (Mar 23)

Chuckster, I started treatment January a year ago. I am a 67 yo guy. About 6 weeks in, I had bad muscle pain that woke me up from my sleep. I had a great response and my

by Toml (Mar 23)

chuck - I've had a few headaches and avoided taking any meds (just trying to tough it out). i'm under the impression that excedrin should be avoided. I will ask my onc during next visit.
Category: Side effects

Replies: 22

Last updated: 9 December 2020
snowman 35 on 6 December 2020

Category: Drug-food interactions

Replies: 4

Last updated: 8 December 2020

Tamarind interacts with TKIs?
by alexmcpee (Dec 8)

Understandable mate we all have our fears. This forum is a god send for sure.
All the best
Al

by snowman 35 (Dec 8)

Thank you both for your replies!! I know I am overacting but sometimes my fear that I will do something wrong doesn't leave me to think clear...

I am really thankful to be in this forum! I

by alexmcpee (Dec 7)

Hey Snowman (very applicable for this time of year haha),
Yeah I wouldnt worry. From what I gather you had an amazing response to treatment. You can't go on scanning everything you eat and drink

by An (Dec 6)

I don't think so ,we are Indians and we put tamarind in lot of our dishes,you should be fine
Category: Drug-food interactions

Replies: 4

Last updated: 8 December 2020
johnw1001 on 2 December 2020

Category: Food & fitness

Replies: 5

Last updated: 3 December 2020

Vitamin D free for vulnerable patients in UK-that is us
by Felix (Dec 3)

It's only a small dose tho of 400 iu that's not enough for us I take 4000 plus Vitamin k 2 .Our NHS is very very stretched regarding funds so I prefer to buy my own.

by David787 (Dec 3)

Thanks for yours John, most interesting. I shall definitely take your advice - being tested for my vitamin D levels at my next check.
David

by David787 (Dec 3)

Thanks for yours John, most interesting. I shall definitely take your advice - being tested for my vitamin D levels at my next check.
David

by alexmcpee (Dec 3)

Brill thanks John,
I too have signed up. Thanks for sharing this I had no idea.
Gotta love our NHS
Alex
Category: Food & fitness

Replies: 5

Last updated: 3 December 2020
benjarvis on 9 November 2020

Category: Uncategorised

Replies: 21

Last updated: 3 December 2020

Newbie and Thank You !
by Roza (Dec 3)

I must say I'm torn between staying on Imatinib and asking to switch at only 6 months in. Yes, the pains can be a nightmare and restricts my love of cycling and long walks etc. but I would

by Nimbus2 (Dec 3)

Patients on these boards report varying side-effects from imatinib. I am far from convinced that supplements will negate these issues. I did suffer very badly from cramps and associated pains. I

by benjarvis (Dec 2)

Good luck hope the pain eases soon

by David787 (Dec 1)

Thanks Ben
Not too bad, thanks...legs and knee joints definitely ready for the Curcumin/tumeric!
Atb
David
Category: Uncategorised

Replies: 21

Last updated: 3 December 2020
alexmcpee on 20 November 2020

Category: Uncategorised

Replies: 33

Last updated: 1 December 2020

MMR finally
by alexmcpee (Dec 1)

That’s very kind. We are all in this together and we get through it together. It’s important to not loose hope if that’s dwindling as it was for me.
Alex

by alexmcpee (Dec 1)

Hey mate,
Thank you! It sure does feel good to hear those MMR words after a pretty long time. I know others have been much longer and are still not MMR I believe for the majority of us it will

by TJ.B (Dec 1)

Hi Alex,
that’s fantastic news, I’m so happy for you ! You are a great contributor to the group .

by ColoradoGuy (Dec 1)

Just saw this post. That is great news! I hope your numbers continue to go down. I made MMR for one lab and then was again just very slightly over again. I think it is a
Category: Uncategorised

Replies: 33

Last updated: 1 December 2020
Sherley on 8 November 2020

Category: Treating CML

Replies: 8

Last updated: 30 November 2020

Switching meds from Dasatinib to nalotinib
by Sherley (Nov 30)

Thanks Ian! I really appreciate your input. Yes I talked to my second doctor which he has actually been there from day one but only as a second opinion bc o am 3 hours away. He

by ipmaki (Nov 17)

Hi Sherley,
Just thought I would second what you have been told on the forum. I am in a similar boat where I am on Sprycel 100mg and got down to 0.106% at 24 months and have increased (and plateaued

by kat73 (Nov 11)

Totally agree with Alex.

by alexmcpee (Nov 8)

No problem you’ve got good advice there stick to that and listen to clinical trial doc and maybe switch doctors if they persist with this idiotic recommendation. You need the experience with
Category: Treating CML

Replies: 8

Last updated: 30 November 2020