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Felix on 10 December 2018

Category: Getting help

Replies: 2

Last updated: 13 December 2018

Personal Independance Payment
by Felix (Dec 13)

Hi David ,thank you for taking the time to reply.Ihave had a quick look ,trying to get any benefit is difficult somebody always gives you a hard time so you just give up,but when you are ill it will

by David Fitz (Dec 12)

Hi Denise,
Sorry you haven’t got much of a response here - perhaps a topic people don’t have much experience with.
Have a look at the “CML UK” Facebook group. There are

by Felix (Dec 10)

Hi all ,Has anybody applied for this benefit and been successful. I am nearly 62 and 1 year since diagnosis,I don’t have a job now I just haven’t got the energy ,and with all the
Category: Getting help

Replies: 2

Last updated: 13 December 2018
Mona Gard on 10 December 2018

Category: Uncategorised

Replies: 2

Last updated: 13 December 2018

Stomach bloating
by Mona Gard (Dec 13)

Thanks John. I guess ill find out for sure at drs visit. I have a hernia and gallbladder issues for years so maybe meds interfering with that. Im only 4 months since dx so still pretty nervous on

by johnw1001 (Dec 11)

Hi there,
Gleevec or imatinib is well known for the GI-gastro intestinal issues associated with it and currently I am going through one of those episodes where it is necessary to be very careful

by Mona Gard (Dec 10)

Is this another side effect to gleevec? Stomach bloating? I have a Dr appt end of Dec with my family Dr but was wanting your thoughts on this. Thank you
Category: Uncategorised

Replies: 2

Last updated: 13 December 2018
fiona vaughan on 6 December 2018

Category: Uncategorised

Replies: 11

Last updated: 12 December 2018

frequency of follow up? What’s normal?
by alliswell (Dec 12)

@fiona
your concerns are well founded..
as RC KİRK mentioned , for the first two months monitoring should be more frequent. at least for CBC.
according to prescribing information of TASigna

by AF (Dec 7)

I am treated in Middle East and I have the same problem. I always have to try really hard with my doctor to get a pcr test. Most recently I have come off my medication and doctor still refuses to do

by David83 (Dec 6)

Hi Fiona,
Just a quick one to add from my experience and a scenario where I’ve been lucky I’ve been monitored closely.
It’s good to make sure you keep an eye on your complete blood

by David Fitz (Dec 6)

Fiona,
One thing worth knowing about PCR tests is that they are difficult to compare between different labs - even when you factor in the "international standard".
So ideally you
Category: Uncategorised

Replies: 11

Last updated: 12 December 2018
Tanya Cuffe on 20 November 2018

Category: Uncategorised

Replies: 12

Last updated: 12 December 2018

Can any supplements help hair grow back?
by sandy craine (Dec 12)

Tanya,
please do not share your private email on this forum. This site has open access so anyone could use your email for their own purposes. If you would like to contact individual members of this

by Tanya Cuffe (Dec 11)

Thanks for that!you are kind and it made me smile! My email ************* if you want further contact.
Tanya

by kat73 (Dec 11)

Tanya - Good for you for the sobriety! This is huge. This is succeeding at living.
I was going to add to my prior message and then forgot, but now it seems pertinent: I find

by fiona vaughan (Dec 11)

Hang in there Tanya. You’ve come a long way.
Category: Uncategorised

Replies: 12

Last updated: 12 December 2018
Mick E on 10 December 2018

Category: About CML

Replies: 2

Last updated: 11 December 2018

Imatininib and heart failure
by Mick E (Dec 11)

Thanks for the reply John
thats pretty much what I have learned from the various sources I have found on the web. Always better though to get it from people who have similar experience.

by johnw1001 (Dec 11)

Hi Mick,
Many years ago I asked my specialist whether imatinib would have an adverse effect on the heart and he said if one had a previous healthy cardio-vascular system there should be no negative

by Mick E (Dec 10)

Hello to All
i was diagnosed with CML 5 months ago and have been frequently reading posts in this forum which have been very useful in coming to terms with what the condition causes and possible
Category: About CML

Replies: 2

Last updated: 11 December 2018
fehr on 24 February 2009

Category: Uncategorised

Replies: 11

Last updated: 11 December 2018

300mg Imatinib
by Mick E (Dec 11)

I was recently lowered to 300mg due to having a worrying period of depression. The lowered dosage has certainly helped with reducing it but the other side effects remain the same for me.

by kat73 (Dec 7)

Sue - I don't know how you've lasted this long. I was miserably sick every day I took Gleevec, for two years. I was continually told "most people tolerate the drug very well

by teddyb (Dec 7)

Better late than never i suppose......
I found this interesting study comparing outcomes for 200mg, 300mg and 400mg doses of Imatinib over many years.
https://onlinelibrary.wiley.com/doi/pdf/10.1111

by fehr (Feb 28)

Sandy, I do have confidence in Hammersmith and I am considering this seriously. I don't think my side-effects are nearly as bad as some, for instance Sue above, but it would be nice to reduce them
Category: Uncategorised

Replies: 11

Last updated: 11 December 2018
DawnD on 10 December 2018

Category: Children & young people

Replies: 4

Last updated: 11 December 2018

PCR test
by DawnD (Dec 11)

I Know so fast! Excited and gonna go for the decrease. Thanks so much CMlJax.

by DawnD (Dec 11)

Totally agree Scuba. Thanks so much for your support and great advice!

by scuba (Dec 11)

Congratulations Dawn - you are in a very good place.
Your CML is very sensitive to sprycel and it worked brilliantly for you.
You should definitely consider lower dose so you can minimize side

by cmljax (Dec 10)

Wow - way to go Dawn. I though I was fast - took me 6 months to get to <.003% PCR, which is as close to negative as you can get without being negative. I reduced dose at 5 months to 450 mg
Category: Children & young people

Replies: 4

Last updated: 11 December 2018
Gitel on 6 December 2018

Category: Uncategorised

Replies: 8

Last updated: 3 February 2022

Tooth extraction, below normal platelets. advice please
by kat73 (Dec 10)

Actually, Gitel, your experience is very common after an extraction, for anybody. Apparently, it's very important to get past those initial crucial hours (a day, two? I forget) without

by Sid35 (Dec 10)

Hello Gitel,
I am so sorry to hear that. I pray for your quick recovery.
Regards

Sid

by Gitel (Dec 9)

Update
tooth pulled with no problem in extraction. Easy

although my platelets were 113, the socket kept bleeding for 8 hours. Large Gelatinous clots
Because it was Saturday, ended up

by Gitel (Dec 7)

Thanks to all of you who replied. I feel calmer. The medical consensus seems to be that 50 is OK for dental work, although they took me off Sprycel for 2 weeks when I dropped to 70 a few months ago
Category: Uncategorised

Replies: 8

Last updated: 3 February 2022
M.ashcroft on 8 December 2018

Category: Treating CML

Replies: 4

Last updated: 10 December 2018

Vitamin D & CML
by M.ashcroft (Dec 10)

Hi David thanks for your advice I do as you suggest

Mike

by David Fitz (Dec 9)

It should also be trivial for your haematologist to add a Vit D test to your next routine bloods. Just ask next time.
David

by M.ashcroft (Dec 9)

Hi Kali

Thank you for your feedback I will speak with my GP about this and ask to have my vitamin D tested

Kind Regards

Mike A

by kali (Dec 9)

I have learned from others on here that Vitamin D plays a significant role in helping our immune system.
I have had low vitamin D for years and have just recently been able to get it into the
Category: Treating CML

Replies: 4

Last updated: 10 December 2018
Mark6899 on 9 December 2018

Category: Uncategorised

Replies: 2

Last updated: 10 December 2018

True remission?
by AlastairC (Dec 10)

Mark, Prof Richard Clarke gave the latest information on stopping treatment at the Patient Day in September. You can listen to his talk from the link to the patient Day on the home page. There is

by RC Kirk (Dec 9)

Welcome to the CML Support forum Mark.
There are several theories for CML cures that researchers are working on. There hasn't been a cure for all of us yet. Some people have been

by Mark6899 (Dec 9)

I am currently 38 and have had this disease since my early 20's. Just wondering if this will ever truly go away?
Category: Uncategorised

Replies: 2

Last updated: 10 December 2018
kali on 2 December 2018

Category: Uncategorised

Replies: 24

Last updated: 10 December 2018

Pleural Effusion
by kali (Dec 10)

Thanks for the information!

by scuba (Dec 10)

This is what I take:
https://images-na.ssl-images-amazon.com/images/I/71YbPlEx7PL._SX522_.jpg
One a day in summer (with food).
Two one day in winter followed by one the next day.
I tend to take

by kali (Dec 10)

The vitamin D3 I take are drops (I didn’t mean sublingual). They are supposed to absorb through your system better. But anyway let me know what type you take. It is worth trying something

by kali (Dec 9)

What brand do you take? Is it a gel or pill? Is it small?
Category: Uncategorised

Replies: 24

Last updated: 10 December 2018
Rick B on 2 December 2018

Category: Uncategorised

Replies: 5

Last updated: 6 December 2018

Feeling somewhat normal?
by Joe Hoffman (Dec 6)

hi rick i have been on glevec for eighteen years lots of leg cramps my teeth are falling out lose of some energy some bone pain but it beat a dirt nap i still make fire wood twice a week i do

by Rick B (Dec 5)

Thank you all for your replies. I appreciate it!

by kat73 (Dec 3)

Rick - Keeping in mind that mine is just one experience, I never had a good day on Gleevec and I took it for two years. I got to the point where I questioned what was the point, if living felt

by Nimbus2 (Dec 3)

I can relate to this, Rick.
I am 62. I started my imatinib on 21 July. My measurements are within target but are poor compared with yours, my FISH at 12 weeks is 15% and PCR 17%.
My side effects
Category: Uncategorised

Replies: 5

Last updated: 6 December 2018
cmljax on 5 December 2018

Category: Treating CML

Replies: 1

Last updated: 5 December 2018

Genomic Testing
by scuba (Dec 5)

One of the "off target" effects of dasatnib I am hoping for:
http://majormouse.org/?q=node/103

by cmljax (Dec 5)

So my wife sends me this link and I am wondering if anyone here has any thoughts on whether or not this would be a good tool to use to determine which TKI might have the fewest and/or least severe
Category: Treating CML

Replies: 1

Last updated: 5 December 2018
bendicco on 5 December 2018

Category: Uncategorised

Replies: 6

Last updated: 5 December 2018

Uh oh freaking out!
by bendicco (Dec 5)

Yes I do know about the grapefruit, but she was adamant about it ie: ginko, garlic . But I’m gonna stay away from that garlic powder. Although cooking with garlic she said is fine!

by David Fitz (Dec 5)

Take nothing beginning with G? Besides grapefruit, that doesn’t sound like sound scientific advice!
In general, TKI takers like us want to stay clear of things that muck around with a family

by bendicco (Dec 5)

Thanks Sandy, I’m hoping that’s what it is! Interesting that two years ago the pharmacist told me not to continue taking the garlic supplements I was taking along with some other

by sandy craine (Dec 5)

Hi Bendicco and welcome,
This latest PCR result rise is more than likely a 'blip' caused by some problem with the blood sample- i.e it may have been contaminated between the draw and
Category: Uncategorised

Replies: 6

Last updated: 5 December 2018
AF on 4 December 2018

Category: Blood tests

Replies: 4

Last updated: 5 December 2018

Increased HB after stopping Dasatinib
by AF (Dec 5)

Thanks David for your reply makes me feel a lot better

by AF (Dec 5)

Yes hameglobin. So if I change to your scale mine will be 13.6

by David Fitz (Dec 5)

Dasatinib can be myelosuppression - that means it can lower blood counts.
Your increase in Hb (haemoglobin) is likely down to you coming off dasatinib and is a good thing. You might feel a little

by RC Kirk (Dec 5)

What is Hb? Is it hemoglobin? If it is, then your result might be normal if your lab uses a different scale than mine.
Here's what my online chart shows: Lab Test - Hemoglobin
Category: Blood tests

Replies: 4

Last updated: 5 December 2018
Daphne Lynn on 4 December 2018

Category: Treating CML

Replies: 2

Last updated: 5 December 2018

Two years into treatment and needing advice
by RC Kirk (Dec 5)

Daphne, I also agree with starting on lower dose of dasatinib. When I was taking 100mg/day, it made my heart skip a beat sometimes and I didn't like it at all.
Your PCR scores have

by scuba (Dec 5)

Daphne,
It is good for you to switch off nilotinib given your atrial fibrillation history. Switching to dasatinib will have less of an effect in that regard. And I strongly agree with you on

by Daphne Lynn (Dec 4)

I am now nearing two years since diagnosis and although I feel well my consultant is disappointed with my results and pushing me to change to Dasatinib which would be my third TKI
My brief
Category: Treating CML

Replies: 2

Last updated: 5 December 2018
Mona Gard on 1 December 2018

Category: Uncategorised

Replies: 5

Last updated: 2 December 2018

Good results
by Mona Gard (Dec 2)

OMG, the head itching was the worst. I went to Er, dermatologist and family dr over it. I was even hoping I had lice. Lol. Bumps and itching. Thank god tho, that has stopped. Been on gleevec for 3

by fiona vaughan (Dec 2)

Funny you mention the stomach muscles Mona. I have gone to bed very early tonight because of stomach pains which have been increasing since taking the Nilotinib over the last month. I’m having

by alexmcpee (Dec 2)

You’re welcome! Yeah you’ve got no worries at that level!!
Yes you were defo caught early I was 330wbc at DX in March and a “Enourmous” spleen 30 times it’s normal size

by Mona Gard (Dec 2)

Aw thanks alex. From reading some of these post, I think mine was caught very early. My wbc was 18,000 at time of diagnosis. I am happy and less scared now.
Category: Uncategorised

Replies: 5

Last updated: 2 December 2018
ckquinn on 1 December 2018

Category: Uncategorised

Replies: 2

Last updated: 1 December 2018

Major surgery
by ckquinn (Dec 1)

Thanks David that's reassuring, hope you are well.
Kate

by David Fitz (Dec 1)

Hi.
I had fairly major abdominal surgery when on dasatinib which involved a general anaesthetic. I had a good chat to my haematologist and also the anaesthetist about it all, and it was pretty

by ckquinn (Dec 1)

I need to have major surgery soon for spinal cord compression, not clear of cause as yet.

Has anyone else had surgery while on Dasatinib, and if so was there any blood problems during/after.
Category: Uncategorised

Replies: 2

Last updated: 1 December 2018
Karinne on 26 March 2018

Category: Uncategorised

Replies: 6

Last updated: 1 December 2018

Half dose of Tasigna
by RC Kirk (Dec 1)

It's my understanding that food (especially fatty food) increases uptake of TKIs. If I remember correctly, taking Sprycel with a meal increases uptake an average of 14%. I'm

by cmljax (Dec 1)

Perhaps not, but I don't eat in the morning anyway, so I still abide by the fasting rules by default. Also, I don't want anything in my stomach messing with uptake or in any way

by RC Kirk (Nov 30)

Perhaps fasting isn't necessary on reduced dose?
Conclusion
Using nilotinib at a reduced dose of 200 mg BID under fed conditions in patients with chronic phase CML seems feasible and safe.

by cmljax (Mar 29)

Hi Karinne:
I started on full dose (600 mg/day) Tasigna at Dx in Oct 2016. Due to multiple side effects and good response, I have reduced my dose 3 times - first to 450 mg/day in March 2017,
Category: Uncategorised

Replies: 6

Last updated: 1 December 2018
HKBails on 1 December 2018

Category: Treating CML

Replies: 1

Last updated: 1 December 2018

Hair loss
by AlastairC (Dec 1)

Thanks for this; not sure if this helps but you have struck a chord. I was on 400mg imatinib for 10+ years, reduced to 200mg least year maintained MMR, and stopped about 7 weeks ago. My hairline had

by HKBails (Dec 1)

Hi I’ve been on Imatinib for a month now and have found my hair is really thinning. Right at the front and back of my head. I have 2 patches with very little hair. It is not as obvious to
Category: Treating CML

Replies: 1

Last updated: 1 December 2018