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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
scuba on 23 April 2021

Category: Uncategorised

Replies: 4

Last updated: 29 April 2021

Food for thought ...
by chrissie (Apr 29)

Great news as we are avid mushroom foragers and have been for decades. Always knew they were good for us but didn't know about anti cancer properties so thanks for that. Roll on autumn as our

by Sunny (Apr 24)

Nope. What I meant was those fungi you buy at the supermarket, I love those. Preferably organic. Magic mushrooms were never my poison of choice, so can't comment, as have never tried.
For me,

by scuba (Apr 23)

Ahh Pigeon - depends on the mushrooms eh?
https://www.guidancepa.com/types-psychedelic-mushrooms-effects/

by Sunny (Apr 23)

Thanks Scuba, great news for us mushroom lovers.
pigeon
Category: Uncategorised

Replies: 4

Last updated: 29 April 2021
RB on 25 April 2021

Category: Organising your life

Replies: 5

Last updated: 28 April 2021

Careers: full time/part time - how has CML affected your work and career?
by RB (Apr 28)

Thanks everyone for sharing their experiences. It’s reassuring to feel I am not alone in my struggles with work. And really reassuring to hear kat73 that it’s taken you 8-10 years to

by kat73 (Apr 27)

Super post, Alex - so well expressed! Maria, for what it's worth, you're way ahead of where I was at two years post-diagnosis. I would say it took me about 8 years to fully

by mamodei (Apr 27)

I have struggled with work. I am a contractor, business intelligence and database work, so move in and out of companies. For most of my life I've relished the pressure and energy of

by SS86 (Apr 26)

What a wonderful post Alex ! This for sure will help many who have this questions around career &life.

Much love & Regards
Category: Organising your life

Replies: 5

Last updated: 28 April 2021
Colin Bridge on 28 April 2021

Category: Uncategorised

Replies: 4

Last updated: 28 April 2021

New Member to Group
by Colin Bridge (Apr 28)

Hello Sandy
Thank you for your early advice, and yes reading everything I've been provided with to learn as much as I can. I have just walked in and opened my patient's letter for my visit

by sandy craine (Apr 28)

Welcome to this forum Colin,
Take your time to learn about CML and its treatment. Thankfully, TKi therapy has changed the prognosis of CML. Should you need any advice about anything to do with CML,

by Colin Bridge (Apr 28)

Hello John
Thank you so much for your speed of response and how welcoming and informative your words are and will be throughout the coming weeks, months and years.
Taking each day and step as it

by johnw1001 (Apr 28)

Hi Colin,
Welcome to the CML club of which you are likely to be a member of for some considerable period of time.Prior to 2002 CML was a fatal condition but now thanks to the benefits of research
Category: Uncategorised

Replies: 4

Last updated: 28 April 2021
Nshah on 23 April 2021

Category: Reproductive health

Replies: 2

Last updated: 27 April 2021

Covid vaccine
by Nshah (Apr 27)

That’s great to hear. May God make it beneficial for you.

by Tel (Apr 25)

Hi Nshah,
I am over 60 and have received 2 Astrazeneca vaccines 10 weeks apart with only mild side affects, ie, slight headache which I didn't need to take anything for and slight tiredness for

by Nshah (Apr 23)

Hi everyone,
Hope you all are doing great. I want to know if anybody here got covid vaccine. How was it and which one is considered safe.
😊
Category: Reproductive health

Replies: 2

Last updated: 27 April 2021
alexmcpee on 27 April 2021

Category: Drug-food interactions

Replies: 4

Last updated: 27 April 2021

Urgent: hayfever induced Asthma
by alexmcpee (Apr 27)

Cheers John that’s great.
I did try several drug interaction sites and found inconclusive information. This is extremely helpful and reassuring to say the least.
I dog sat for a couple of days

by johnw1001 (Apr 27)

Hi Alex and David,
Regarding drug interactions and tkis I have found that the best complete source is an article by a group of Swiss researchers published in Blood in 2011 titled "Drug

by alexmcpee (Apr 27)

Hi David,
I really appreciate your reply.
That’s great I’ll continue with the Ventolin for as long as I need it. I am not taking any hayfever meds until a Dr confirms it’s ok with

by David Fitz (Apr 27)

Hi Alex,
I get hay fever, and this time of the year is pretty bad for it! Post-COVID lung problems don't make things any easier, so I have the blue salbutamol inhaler like you, but also
Category: Drug-food interactions

Replies: 4

Last updated: 27 April 2021
Richard on 21 April 2021

Category: Uncategorised

Replies: 4

Last updated: 27 April 2021

Other cancers
by Richard (Apr 27)

Thank you for your replies, and for your concerns. I hope to be around for at least a few more years. Now I have both of my jabs for Covid, there is nothing to stop me living to 100!

by Christine R (Apr 23)

Sounds like it is early days in your diagnosis and there may well be non surgical treatments that can be tried and keep things under control. Don't lose hope. We all have a time after a

by Richard (Apr 21)

Thanks for your input, and information. Unfortunately I am not able to have any operation, as I have a problem staying alive under anaesthesic, because I have ischaemic heart disease. I suppose that

by CharlieL (Apr 21)

I'm not aware that that is a side effect of imatinib, or linked in any way, so its probably quite reasonable for your doctor to refer you for some investigations. I'm guessing that
Category: Uncategorised

Replies: 4

Last updated: 27 April 2021
auditek82 on 25 April 2021

Category: About CML

Replies: 4

Last updated: 26 April 2021

Chronic myeloid leukemia and ulcerative colitis query
by KingBurger (Apr 26)

Apologies, I’m not sure I fully understand your post. I think we would all like to be off TKIs if possible, since there could be long term side effects. However, TFR will not be an option for

by auditek82 (Apr 26)

What medications are you on please?

by auditek82 (Apr 26)

Doctor wants me free from tki since I am in remission and these drugs have fatal long term side effects such as peripheral arterial disease etc. and therefore he told me to utilize ulcerative

by KingBurger (Apr 26)

Hello there, I’m in the same UC/CML boat. Why do you say CML is cancelling out your UC treatment options? It might just be me, but I have noticed my UC has gotten significantly better since
Category: About CML

Replies: 4

Last updated: 26 April 2021
MartinZA on 16 August 2017

Category: Side effects

Replies: 13

Last updated: 24 April 2021

Benign lymph node swelling resembling lymphoma
by MartinZA (Apr 24)

Hi Craig
Sorry for the late reply - I don't check this forum as often as I should! I hope you are getting on well with your decision as it is a tough one.
Just to answer your question: I took

by Craig747 (Apr 18)

Thanks sounds good- email just sent to the address jms.ny.2021@gmail.com so now you have my contact as well. We got this!!

by deraj14 (Apr 18)

Hi Craig, Thanks for your reply -- sorry we are both in this predicament, but it is comforting to know that there are others who are having similar experiences. What is your reasoning for

by Craig747 (Apr 18)

Hi Deraj - thank you for sharing your experience and I am sorry that you are also having the same reaction. I am also not in favor of changing therapies since my response has been been really good
Category: Side effects

Replies: 13

Last updated: 24 April 2021
SS86 on 22 April 2021

Category: Side effects

Replies: 5

Last updated: 23 April 2021

Swere Puffiness around eyes and face - Dasatinib 100mg
by johnw1001 (Apr 23)

It is very normal with tkis to have what is called peri-orbital odema or swelling of the tissues around the eyes.In addition some have irritated eyelids or blepharitis.You could try a warm

by SS86 (Apr 22)

Take care Alex.

by alexmcpee (Apr 22)

No problem yes same for me. I had one eyelid recently very swollen below the eye. It persisted for 4 weeks and then went. I am suffering from bad hayfever this year for some reason and they’re

by SS86 (Apr 22)

Thanks Alex for responding.

The puffiness is more in the morning and comes down a bit by the evening. Not sure how and why.
Thanks
Category: Side effects

Replies: 5

Last updated: 23 April 2021
MANNI OBEROI on 21 April 2021

Category: Blood tests

Replies: 3

Last updated: 22 April 2021

How much corona effects CML patients
by MANNI OBEROI (Apr 22)

Thanks alex....thank you so much for the support

by MANNI OBEROI (Apr 22)

Thanks alex....thank you so much for the support

by alexmcpee (Apr 22)

No different from the general public that dont have CML if your CML is responding to TKI. Several people on here got COVID and recovered fine. The rules apply the same for us some will get it worse

by MANNI OBEROI (Apr 21)

Just want to know the immune system of CML patients is able to fight covid or not
Category: Blood tests

Replies: 3

Last updated: 22 April 2021
Sd on 21 April 2021

Category: Side effects

Replies: 1

Last updated: 22 April 2021

Cardiac issues with imatinib
by alexmcpee (Apr 22)

That’s surprising I thought only 2nd gen drugs come with that warning. Didn’t realise it relates to Imatinib too. From what I understand that’s the safest of all drugs as it’

by Sd (Apr 21)

I have developed prolonged QT interval after 19 months on imatinib. I have no underlying cardiac issues, my echo cardiogram was normal. Apparently this occurs in 30-40% of people taking imatinib. It
Category: Side effects

Replies: 1

Last updated: 22 April 2021
Alaina on 3 February 2021

Category: Uncategorised

Replies: 66

Last updated: 22 April 2021

Covid Vaccine
by Alaina (Apr 22)

Thanks everyone for sharing your experiences. It gave me the reassurance that I needed. I have now taken both my vaccines. No problems with the first, but probably too soon to tell for the second.

by Buzzm1 (Apr 21)

Wanted to mention that today (Wednesday, the 21st) will highly likely set a World Record in New Cases/day. The current record is 845,424.
Tuesday, April 20, 2021
World 143,536,452 +825,

by Buzzm1 (Apr 20)

Read Trey's post from the LLS CML forum:
https://communityview.lls.org/statuses/8921

by Sunny (Apr 19)

Thank you Sandy, I guess we just have to hope for the best, but I am sceptical.
pigeon
Category: Uncategorised

Replies: 66

Last updated: 22 April 2021
CharlieL on 21 April 2021

Category: Treating CML

Replies: 1

Last updated: 22 April 2021

Beyond TKIs?
by alexmcpee (Apr 22)

You have nothing to worry about clinically no difference between 0.016% and MR4. If you start to loose MMR altogether I'd say thats when to start worrying, but even then as long as you

by CharlieL (Apr 21)

Hi everyone,
31 year old father of one here. I've been on nilotinib/Tasigna since 2016 and got a pretty good response to it (to start off with). I even managed to get beyond
Category: Treating CML

Replies: 1

Last updated: 22 April 2021