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chrissie on 16 February 2020

Category: Uncategorised

Replies: 3

Last updated: 17 February 2020

Radiotherapy and CML??
by chrissie (Feb 17)

Many thanks, Guys. Yes, David, it's whether it's safe for me.
My mind is at rest now,
Best,
Chrissie

by johnw1001 (Feb 16)

Hi Chrissie,
I am not an oncologist/radiation specialist but as well as being a CML veteran(14 years) three months ago I had treatment for early stage prostate cancer in the form of targeted

by David Fitz (Feb 16)

Hi Chrissie,
Are you asking if it’s safe for her, or for you? I presume you ... and if so, I can’t really see any potential problem at all. If you meant the other way around, I don

by chrissie (Feb 16)

I have an elderly neighbour who doesn't drive. We live 10 miles from the hospital where she is about to start 3 weeks of daily radiotherapy for breast cancer. Luckily she has avoided chemo
Category: Uncategorised

Replies: 3

Last updated: 17 February 2020
Batman0424 on 4 February 2020

Category: Treating CML

Replies: 8

Last updated: 16 February 2020

Confused - treatment change
by Batman0424 (Feb 16)

So we saw (and are switching to) Dr Mauro last week and he agreed that my wife should continue on Dasatinib @ 50mg. We will do another PCR test in 6 weeks, which will be 2 continuous months on

by Batman0424 (Feb 4)

Thank you Sandy for clarifying / confirming my assessment.

I do not know why a PCR test was ordered when my wife was only treated for a total of 24 days spread over 2 months

by sandy craine (Feb 4)

Hi,
If I understand your situation and concerns correctly, I suggest you take a look at our PCR booklet which may help you when trying to understand your wife's test results.
At diagnosis

by Batman0424 (Feb 4)

Thank you, Scuba - your response was very helpful and reassuring.
Currently, my wife seems to be tolerating 50mg of dasatinib relatively well. Her panels look great at the moment on 50;
Category: Treating CML

Replies: 8

Last updated: 16 February 2020
Dustylloyd on 15 February 2020

Category: Uncategorised

Replies: 3

Last updated: 16 February 2020

Support from employer
by Dustylloyd (Feb 16)

Thanks David and John for your replies, as always very helpful, both raising points about the sometimes negative support people with cancer conditions face, I’m in the Uk, but like you say

by johnw1001 (Feb 16)

Hi Pete,
Assuming you are in UK The Equality Act 2010 states that you are disabled if you have a physical or mental impairment that has a substantial and long term negative effect on your

by David Fitz (Feb 16)

Hi Pete -
My employer have been great. But not all are.
Where do you live? Here in the UK the Equality Act mandates that employers make “reasonable accommodations” for people with

by Dustylloyd (Feb 15)

This is not a “ it’s not fair “ plea and I have raised this question before but I just wonder what is classed as normal support from your employer for people with Cml, in the 5
Category: Uncategorised

Replies: 3

Last updated: 16 February 2020
Mosalem2093 on 15 February 2020

Category: Blood tests

Replies: 2

Last updated: 16 February 2020

BCR_ABL test and Sprycel
by Mosalem2093 (Feb 16)

Thanks a lot David. ..
I think he was at 36% at the last Tasigna results which let them decide to switch over to Sprycel..I hope that by time he can get to the good levels. He has 100mg Sprycel

by David Fitz (Feb 16)

Hi there, and welcome.
18% after 2 months is pretty good. The “optimal” result at 3 months is 10% - and if at 18% at 2 months I would expect him to achieve that optimal result at 3

by Mosalem2093 (Feb 15)

Hi all,
I am new to this forum. My dad has CML and they switched him from Tasigna to Sprycel as doctor claims it's not working given the subject test recent results. He suffers from side effects
Category: Blood tests

Replies: 2

Last updated: 16 February 2020
Chuckster on 11 November 2019

Category: Blood tests

Replies: 12

Last updated: 16 February 2020

Latest Blood Test Results BCR/ABL1 .
by Mosalem2093 (Feb 16)

Hi Scuba,
Do you have a link to these ASH papers that Sprycel 20 mg is effective as my dad has similar case and would like to share it with his doctor,

by Chuckster (Feb 15)

Thanks Scuba!
I am so glad my oncologist agreed with me to ride this past six months out by staying with the 20 MG Sprycel dosage than trying a different Med.
20MG, so far, seems to be

by scuba (Feb 15)

Cool. You know I am not surprised!
(Kat - I believe there were several papers at ASH on low dose sprycel's effectiveness (20 mg). I'll have to find them again)

by Chuckster (Feb 14)

THANKS!
Category: Blood tests

Replies: 12

Last updated: 16 February 2020
snowman 35 on 11 February 2020

Category: Other conditions

Replies: 6

Last updated: 13 February 2020

Stressed again... Scuba, David or anyone please help...
by snowman 35 (Feb 13)

Thanks for your quick response Scuba! I will make it a habit!!

by scuba (Feb 13)

"My concern is if I take sprycel without water(because I don't have that time) and I lelp it go down with some food affects the absorption or the effectiveness of the drug.."
No. Makes

by snowman 35 (Feb 13)

I understand that Scuba and I drink lots of water during the day... Maybe it is not the first thing I do in the morning(when I take sprycel) but I drink at least 2-2.5 liters per day during winter

by scuba (Feb 12)

A full glass of water is always suggested to help get the little pill where it needs to go - but once in the stomach, stomach acids take care of the rest and dissolve the drug for near 100%
Category: Other conditions

Replies: 6

Last updated: 13 February 2020
scuba on 8 February 2020

Category: Uncategorised

Replies: 7

Last updated: 13 February 2020

Dasatinib not just for CML?
by scuba (Feb 13)

Additional recent publications on Quercetin method of action:
https://www.ncbi.nlm.nih.gov/pubmed/32007919

by scuba (Feb 12)

Dasatinib almost certainly saved my life following CML diagnosis. Interesting that it may actually help extend it. I have always been keen on stopping therapy because of dasatnib's toxicity. But

by Nimbus2 (Feb 12)

Thank you, Scuba.
Google will translate the article below from German to English.
Anti-ageing: On the way to the Fountain of Youth?
https://www.pharmazeutische-zeitung.de/ausgabe-072018/

by Sunny (Feb 11)

Thanks Sandy, I found the comprehensive list of Natural sources of Quercetin particularly helpful. Many of the items on the list are already incorporated into our daily diet, but after reading
Category: Uncategorised

Replies: 7

Last updated: 13 February 2020
stefanolucas on 13 February 2020

Category: Treating CML

Replies: 2

Last updated: 13 February 2020

Question , please advice
by stefanolucas (Feb 13)

Yes , at the beginning she had began her treatment with Imatinib but she lowed to 20% not in a fast way how it shoulded be doc says , after she reached 20% from this point Imatinib didn’

by ColoradoGuy (Feb 13)

A little background regarding the resistance to Imatinib would be helpful. Did her numbers climb in two consecutive tests significantly? Was mutation testing performed?
I think that the

by stefanolucas (Feb 13)

Hello ,
As a background story which are in my other threads , about my sister ( 21yrs) who was diagnosed in June,2018 with CML and had a resistance to imatinib after we switched to
Category: Treating CML

Replies: 2

Last updated: 13 February 2020
Rayjee33 on 5 February 2020

Category: Uncategorised

Replies: 8

Last updated: 12 February 2020

Treatment in
by Nimbus2 (Feb 12)

By coincidence, I am presently reading Cancer Ward by Aleksandr Solzhenitsyn. That book examines cancer treatment in the USSR in 1955.

by Rayjee33 (Feb 12)

The only way I could do that was if you had to do a lot more work and then you would be done by yourself so you would just do

by sandy craine (Feb 10)

Hi and welcome,
It might be more helpful for you to contact one or both of the following patient organisations based in Russia. I hope they can give you some advice.
The national association of

by Nimbus2 (Feb 9)

Yes, there is one awkward mutation that would probably require the use of ponatinib. The mutation name, which is a set of numbers and letters, may not automatically translate into Russian. From your
Category: Uncategorised

Replies: 8

Last updated: 12 February 2020
Justina on 8 February 2020

Category: Side effects

Replies: 4

Last updated: 10 February 2020

Side effects
by sandy craine (Feb 10)

Hi,
First, congratulations on such a low PCR result. From what I have read, imatinib induced amenorrhea (absence of menstruation) may be a side effect of therapy, but is certainly not a common one,

by kat73 (Feb 10)

How old are y'all? It's very common to have these changes in the decade before menopause. They even have a name for it: perimenopause. The 40's are not kind to women.

by Tater1 (Feb 8)

Hi
I am on 50 mg dasatinib and have seen huge changes in my period, but in my case more frequent and heavier as a result of the medication. From what I’ve read, it’s not

by VickyK. (Feb 8)

Hi Justina,

I had many abnormalities in my period cycle six months after being on TKI treatment, the only difference is that I am on nilotinib.Things now are much better but not perfect as
Category: Side effects

Replies: 4

Last updated: 10 February 2020
johnw1001 on 10 February 2020

Category: Treating CML

Replies: 0

Last updated: 10 February 2020

What happened to Bafetinib?
by johnw1001 (Feb 10)

Bafetinib (N-187) which is an inhibitor of BCr-Abl was developed as an experimental drug in Japan and then licensed for development by Cayman Chemical in USA after being given orphan drug status in
Category: Treating CML

Replies: 0

Last updated: 10 February 2020
Karthikeyan on 10 February 2020

Category: Uncategorised

Replies: 1

Last updated: 10 February 2020

Need suggestions from scuba and others.Wrongly switched from glivec to nilotinib.can i come back to glivec
by scuba (Feb 10)

Your PCR results are excellent. The FISH results make no sense and are likely erroneous. It's not possible for your PCR to be near "undetectable" and FISH be 50%. Ask your doctor to

by Karthikeyan (Feb 10)

Hello scuba and everyone. i'm Karthikeyan.

Diagnosed cml in January 2015.this forum is really helpful to newcomers.thanks for the service.i was taking imatinib 400 mg until unusual fish test
Category: Uncategorised

Replies: 1

Last updated: 10 February 2020
saifur360 on 2 February 2020

Category: Side effects

Replies: 2

Last updated: 9 February 2020

Eyes fold, burning
by johnw1001 (Feb 9)

Imatinib can cause sensitivity around the eyelids and a swelling of the tissues in that area-a condition called blepharitis.I use Blephasol which is basically a saline solution and wipe the eyelids

by David Fitz (Feb 2)

Imatinib can cause dry eyes. I don’t take imatinib, but have had dry eyes in the past and found carmellose sodium drops very effective for lubrication.
David.

by saifur360 (Feb 2)

I am on imatinib (Veenat 400 mg) 4 years.
Now my RQ-PCR is 0.015
ESR 84
Hemoglobin 11.2
Last 1 year my both eyes are burning, drop Water, and when I looking angle my eyes white
Category: Side effects

Replies: 2

Last updated: 9 February 2020
scuba on 2 February 2020

Category: Uncategorised

Replies: 2

Last updated: 8 February 2020

Coronavirus and you
by Sunny (Feb 8)

Useful information as usual, Scuba, and putting things in perspective.
Thank you,
pigeon.

by Taluta (Feb 6)

Thank you for sharing
knowing too well our immune system needs a boost!!!

by scuba (Feb 2)

We are reading a lot lately on the rapid spread of Coronavirus. Much of what is out there is scaring people unnecessarily.
Coronavirus is less deadly than the flu - keep that in mind. Flu spreads
Category: Uncategorised

Replies: 2

Last updated: 8 February 2020
PhilB on 7 February 2020

Category: Uncategorised

Replies: 3

Last updated: 8 February 2020

Long time no post
by Chrishertz (Feb 8)

Congratulations

by PhilB (Feb 7)

I do indeed remember the rollercoaster. The old LLS site played such a big role in getting me through it and I enjoyed my years helping others with their journeys. It was a wrench to

by scuba (Feb 7)

Philb - A blast from the past! Great to hear from you. We pretty much started on this road together. I try to stay involved mostly for new comers. We all remember the emotional roller coaster in the

by PhilB (Feb 7)

I've been off the boards for some years getting on with life. Hi to Sandy and to Scuba and anyone else from the old LLS boards who sought sanctuary over here. I hope life is treating
Category: Uncategorised

Replies: 3

Last updated: 8 February 2020
koralia.pappi on 6 February 2020

Category: Blood tests

Replies: 3

Last updated: 7 February 2020

hsCRP levels
by David Fitz (Feb 7)

Well I imagine flu could certainly increase CRP - stands to reason I guess but I’m no expert. Keep an eye on it, and if your doctor isn’t fussed about it make sure you get a really good

by koralia.pappi (Feb 7)

Hi David,
My doctor disregards this as a non-issue. Specifically for the last reading, I think it is also kind of expected, because all readings are a bit high due to the flu (WBC 10.4, ESR: 21,

by David Fitz (Feb 7)

CRP - I only remember that one because it was a topic of constant conversation with doctors when my twins lived in the hospital. It’s a marker for inflammation if I remember rightly and I

by koralia.pappi (Feb 6)

Hi all,
Question on hsCRP:
My levels have been around 0.8-0.9 mg/dl for the last 3 lab tests (Sept, Nov, Feb), with a normal value of <0.3mg/dl according to my lab.

So what's with this
Category: Blood tests

Replies: 3

Last updated: 7 February 2020
Taluta on 29 January 2020

Category: Uncategorised

Replies: 4

Last updated: 6 February 2020

Just joined
by Taluta (Feb 6)

Hi,,since 2018 but still taking taking gleevec
1 tablet 400g every night,,,in 2010 I started with 800g
and as years and progress came by slowly started dropping to
600g

by Taluta (Feb 6)

Yes !!! There is hope ,,,Iam planing a big one for my 40th God willing!!!!

by alexmcpee (Jan 29)

Amazing!! People like you give us “newbies” (nearly 2 for me) a lot of hope! Go and celebrate! I would!
Alex

by scuba (Jan 29)

Congratulations! How long have you been "undetected"?
Category: Uncategorised

Replies: 4

Last updated: 6 February 2020
nicolaclubb on 3 February 2020

Category: Side effects

Replies: 1

Last updated: 4 February 2020

Enlarged Liver
by sandy craine (Feb 4)

Hi,
I have done a quick search and understand that average liver sizes are as follows:
6.4 cm for 1 to 3 months
7.6 cm for 4 to 9 months
8.5 cm for 1 to 5 years
10.5 cm for 5 to

by nicolaclubb (Feb 3)

Hi.
Was wondering if anyone has experienced Liver enlargement since starting medication. Just had scan my liver is over double it’s normal size. It’s 17.5cm and should be 7.5
Category: Side effects

Replies: 1

Last updated: 4 February 2020
Sandrahervieux on 3 February 2020

Category: Other conditions

Replies: 5

Last updated: 3 February 2020

New to this
by sandy craine (Feb 3)

Hi Sandra and welcome,
Given your comment about your appointment being rushed you were not given much information about either CML? or treatment options? firstly I would just like to reassure you

by Sandrahervieux (Feb 3)

Oh wow David. Thank you for all the links! I will definitely have a look!!

by Sandrahervieux (Feb 3)

Thank you Scuba. I like how you’ve reframed this into steps. It appears a little less overwhelming. Hopefully things remain as smooth as possible. Thanks again.

by David Fitz (Feb 3)

Scuba already said this, but take your imatinib with whatever if usually your biggest meal of the day. It really makes a big difference.
We have a booklet here, which you might find helpful. Don
Category: Other conditions

Replies: 5

Last updated: 3 February 2020
koralia.pappi on 23 January 2020

Category: Organising your life

Replies: 11

Last updated: 1 February 2020

We will still get the common cold!
by scuba (Feb 1)

I have to "take" more vitamin D3 in order to get it into the low 70's (ng/ml) because I also take vitamin K2 (and eat Natto, which is high in K2). Vitamin K2 "uses" D3 in

by cmljax (Jan 31)

Your doctor is right to want to monitor it, because as Scuba says, we are not all the same. My D3 level was at 25 when I was diagnosed, not critically low, but certainly not high enough. I

by cmljax (Jan 31)

Your doctor is right to want to monitor it, because as Scuba says, we are not all the same. My D3 level was at 25 when I was diagnosed, not critically low, but certainly not high enough. I

by koralia.pappi (Jan 29)

I also don't need subscription for D3, but my doctor wants to monitor it (actually, two doctors, haematologist and endocrinologist), and not increase the dosage too much, in case it goes through
Category: Organising your life

Replies: 11

Last updated: 1 February 2020