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Nimbus2 on 15 October 2018

Category: Uncategorised

Replies: 8

Last updated: 22 January 2019

In the United Kingdom, does a CML diagnosis preclude a person from leaving his/her body for organ donation or for medical research?
by Nimbus2 (Jan 22)

I have the answers now. I wrote to the University of Birmingham in November, but they failed to reply.
The University of Leicester responded promptly and agreed that CML does not preclude the use of

by Nimbus2 (Nov 25)

Thank you, Nigel. I have had it confirmed that a person with CML cannot donate his/her organs to others. This is out of the question. However, my consultant sees no reason why a person with CML in

by Nimbus2 (Oct 16)

Thank you, Nigel. I think, having read these postings, that organ donation is a virtual no-go (save for eyes) for those diagnosed with CML. I loosely used the term "medical research" in the

by nigel (Oct 15)

I actually made this enquiry some years ago, I’ll have a look if I still have the email. I was told that technically yes, we can still donate as the issue is in the blood, not the tissue, however
Category: Uncategorised

Replies: 8

Last updated: 22 January 2019
Tanya Cuffe on 19 January 2019

Category: Uncategorised

Replies: 9

Last updated: 22 January 2019

Fatigue is ridiculous!
by Tanya Cuffe (Jan 22)

Thanks for that Dawn,much appreciated and much love to you as well ❤️Better get on antidepressants than trying self medicate on opioids!

by DawnD (Jan 21)

Hi Tanya, I took Lexapro after the breast cancer diagnoses. I was anxious and depressed. It worked really well. There are so many new ones out now, all having different ways of action, but they all

by Tanya Cuffe (Jan 21)

Thank you for that,Dawn.May I ask if you take antidepressants and if so,what?I will look into the books you mentioned as well.

by DawnD (Jan 20)

Hi Tanya, I too experience severe fatigue but it is more prevalent when my hemoglobin and Red blood cells are low. I also fight depression. Depression can have many causes, some chemical but other
Category: Uncategorised

Replies: 9

Last updated: 22 January 2019
charissa on 20 January 2019

Category: Side effects

Replies: 2

Last updated: 21 January 2019

Tasigna
by charissa (Jan 21)

Thank you Sid. I hope this forum can help me. I am happy to be part of this org as this will help me tell my stories and talk to someone who has the same condition as mine.

by Sid35 (Jan 21)

Hello Chacha,
I am so sorry to hear that.
Have you checked with Max foundation? I heard they have a help network. Please refer to this link.
https://www.themaxfoundation.org/global/asia-pacific/
I

by charissa (Jan 20)

Hi i am chacha from the philippines, i was diagnosed with CML 2013. before i used gleevec but my doctor change it to tasigna. It is very expensive maybe someone help me who still has tasigna
Category: Side effects

Replies: 2

Last updated: 21 January 2019
AF on 28 December 2018

Category: About CML

Replies: 14

Last updated: 18 January 2019

What’s new in CML
by LabNoir (Jan 18)

MD anderson in Houston is the only place offering this as a trial.
No trial in my case..me and doc decided we should give it a try based on early clinical results.I live in a free country

by AF (Jan 16)

Which hospital is offering this trial ? Is it in US or UK ?

by LabNoir (Jan 15)

I am close to MR4 after 6 month, been on and off Venetoclax. hard to say until I up the dose.
the important thing is that at 50mg, I don’t feel any side effect.

by AF (Jan 14)

Can you tell us more how long were you on the combination ( Dasatinib and Venetoclax) trial. Did your pcr drop ? Are u treated in the US ?
Category: About CML

Replies: 14

Last updated: 18 January 2019
Tedro on 18 January 2019

Category: Treating CML

Replies: 1

Last updated: 18 January 2019

missed my dose
by David Fitz (Jan 18)

No, just take it again at 4pm as normal and don’t worry.
David.

by Tedro (Jan 18)

Hello,
I take Sprycel 100mg once a day at 4pm. I missed it today and took it when I remembered at 1am, 9 hrs late.
Should I, then, take my next dose 4.5hrs later (8:30pm) and then the next day back
Category: Treating CML

Replies: 1

Last updated: 18 January 2019
Damian Gabilondo on 17 January 2019

Category: Uncategorised

Replies: 2

Last updated: 18 January 2019

New here
by Damian Gabilondo (Jan 18)

Muchas gracias estamos en contacto e iré informando, voy a ver si puedo traducir lo que publique gracias y espero que siga bajando ese par pronto

by Job Guerra (Jan 17)

Hola Damian. Primeramente disculpa mi ortografia porque casi nunca escribo en espanol y adicionalmente mi teclado no se presta para escribir en espanol. Pero de todos modos queria

by Damian Gabilondo (Jan 17)

Hello colleagues, I write from Argentina, I am Damián and I am 42 years old, 1 beautiful woman and 2 beautiful daughters of 10 and 13 years old, looking for this page and I really liked the
Category: Uncategorised

Replies: 2

Last updated: 18 January 2019
gemmatins on 13 January 2019

Category: Getting help

Replies: 5

Last updated: 17 January 2019

Supporting my dad
by Ray Sell (Jan 17)

Bless your heart. My three children are very supportive and it means the world to me. NCCN Guidelines for patients Chronic Myeloid Leukemia is a very good publication to purchase.

by gemmatins (Jan 14)

Hi there thank you so much for responding to me! Your words have touched me greatly thank you. I'm sending love and prayers to you and your own diagnosis thank you again x

by gemmatins (Jan 14)

Hi, thank you so much for responding! I will continue researching and will take full advantage of this site, thank you for your advice its really helped!x

by AlastairC (Jan 14)

Hi, your Dad is lucky that he has you to help him. The vast majority of CML patients do very well, and the mental side is often every bit as challenging as the symptoms and side effects of the drugs
Category: Getting help

Replies: 5

Last updated: 17 January 2019
Dustylloyd on 17 January 2019

Category: Uncategorised

Replies: 4

Last updated: 17 January 2019

Support at work
by Dustylloyd (Jan 17)

Many thanks John for your informative reply, what as niggled me for the last 2 years is the fact prior to my diagnosis 4 years ago I had no intention of ever contemplating reducing, or retiring

by johnw1001 (Jan 17)

Yes unfortunately employees with disabilities whatever they might be are still discriminated against despite legislation, employment tribunals and other safeguards in place.If you have been

by Dustylloyd (Jan 17)

Many thanks Alastair.

by AlastairC (Jan 17)

This link gives some information on the Equality Act, which now includes the requirements of the former Disability Discrimination Act. Hope that's useful - might be worthwhile repeating the
Category: Uncategorised

Replies: 4

Last updated: 17 January 2019
Felix on 15 December 2018

Category: Blood tests

Replies: 10

Last updated: 17 January 2019

Am I becoming resistant to Imatinib ?
by AlastairC (Jan 17)

Hi Denise
Sorry to hear this but glad you are now in the care of an expert team who can deal with this situation effectively. The bone marrow is necessary to see the types of mutation(s) you are

by Felix (Jan 16)

Hi all, just had my appointment with a new consultant in a different hospital .It looks like I am becoming resistant to Imatinib so might soon change to Nilotinib.How are the side effects with this

by Ray Sell (Dec 28)

That sounds really positive. Please post updates on your progress. A belated Merry Christmas to you and a Happy New Year to you.
I have blood draw Jan 3 and am looking forward to it.

by Felix (Dec 26)

Hi Ray ,yes following rules non of the forbidden fruits ,it's the squished red grapes I am missing the most especially with my Christmas dinner 🍷🍷🍷.I am just waiting for an appointment with a
Category: Blood tests

Replies: 10

Last updated: 17 January 2019
Riggered on 14 January 2019

Category: Uncategorised

Replies: 7

Last updated: 16 January 2019

Looking for advice on storing extra Sprycel
by Riggered (Jan 16)

Thanks to you all. Appreciate the help.....

by RC Kirk (Jan 15)

On page 34 -
"6.3 Shelf life
3 years.
6.4 Special precautions for storage
This medicinal product does not require any special storage conditions."

by scuba (Jan 15)

Yes. That's it, thank you.
http://www.ema.europa.eu/docs/en_GB/document_library/WC500251572.pdf

by gof (Jan 15)

This is because link was shorten (three dots in the middle).
I think this is the link Sprycel Assessment Report ?
Category: Uncategorised

Replies: 7

Last updated: 16 January 2019
POPPY on 16 January 2019

Category: Blood tests

Replies: 3

Last updated: 16 January 2019

PCR TEST @ 12% & Low Levels of Platelets
by David Fitz (Jan 16)

I would not worry about the dose. 300mg (twice daily) is the standard dose for nilotinib, and is in no way a low dose.
David.

by POPPY (Jan 16)

thanks David. what worries me is the next PCR test as dose has been reduced to 300mg. However, with dose reduction, side effects are definitely well managed.
The platelets were 70,000 per ml

by David Fitz (Jan 16)

10% at 3 months is considered "optimal", and 12% is as near as makes no difference to that so it's an excellent result. Exactly what you would hope for.
How low are your

by POPPY (Jan 16)

Hi All!
3rd month results of PCR @ 12% , is it alarming? This test was taken when at Nilotinib 4oomg (twice a day).
After the blood test was taken for PCR, dose reduced to Nilotinib 300mg (twice a
Category: Blood tests

Replies: 3

Last updated: 16 January 2019
ipmaki on 15 January 2019

Category: Blood tests

Replies: 3

Last updated: 15 January 2019

Elevated Lactate Dehydrogenase Test (LDH)
by ipmaki (Jan 15)

Thank you for the responses. I didn't do anything too strenuous before the test, but as I read more about LDH I am starting to think that it could be influenced by a cold I've been fighting

by RC Kirk (Jan 15)

Hi Ian,
Looking back at some of my lab results, it looks like the "normal" range for LDH is 110 to 250. Your result is barely above high normal so I wouldn't worry about it. I'd

by cmljax (Jan 15)

Hi. The most important thing for you right now is the trend in your PCR which has been continually falling. There are hares and there are turtles and while it feels better at the time to be a

by ipmaki (Jan 15)

Hi all. Just got my 12 month results (PCR of 0.256%). I've been on Sprycel 100 mg for the past year and not quite meeting the 0.1% goal. I guess I am a slower responder. Previous results were:
Category: Blood tests

Replies: 3

Last updated: 15 January 2019
viksaparli on 11 January 2019

Category: Uncategorised

Replies: 8

Last updated: 15 January 2019

Don't take alcohol because it has Acetaldehyde
by teddyb (Jan 15)

We recently bought a cabin, and in this cabin there is wine, beer and sometimes even whisky. Sometimes, when we have good freinds visiting, maybe even the whole wine bottle disappears. For me its

by Ray Sell (Jan 13)

I'm kinda old school as well. On a hot day an ice cold Corona and remembering the beaches in Mexico where they bring it to you in buckets. No pictures, thank God. There I was,

by David Fitz (Jan 12)

I think we agree. The point about doing everything in moderation, "including moderation" is sometimes you shouldn't bother with moderation.
On that note, I have my first night

by scuba (Jan 12)

David - I don't believe in moderation. That leads to mediocrity.
I believe in living fully. And that means - once in a while - no moderation. It's one extreme or the other.
And as we
Category: Uncategorised

Replies: 8

Last updated: 15 January 2019
Tedro on 3 January 2019

Category: Drug-drug interactions

Replies: 2

Last updated: 15 January 2019

supplements: Gaba and L-Thiamine?
by bendicco (Jan 15)

GABA is Not Gabapentin it is a suplement

by LabNoir (Jan 14)

https://www.ncbi.nlm.nih.gov/pubmed/28514443
Apparently, Gabapentin inhibits BCAT1 which drive CML progression to blast so may be you should consider getting back on it.
Why were you on

by Tedro (Jan 3)

Hi,
My psych wants me to take Gaba, Fish Oil, and L-Thianine.
I take 100mg Sprycel once a day. My CML level (what do you call that, Dr uses 3 letters?) is .02.It was 100 8 months ago, when I started
Category: Drug-drug interactions

Replies: 2

Last updated: 15 January 2019
Ben C on 15 January 2019

Category: Treating CML

Replies: 3

Last updated: 15 January 2019

West London Treatment for a Newbie
by johnw1001 (Jan 15)

Hi Ben,
I have 13 years experience of both NHS and private healthcare funded on insurance and in addition was initially dx overseas in Bangkok so had the issue of whether it was safe to fly home as

by AlastairC (Jan 15)

If you're in West London the Hammersmith is a no brainer. Prof Jane Apperley's team are very highly respected. Dr Dragana Milojkovic is one the consultants there; she did a talk at the

by Nimbus2 (Jan 15)

The NHS can act very quickly. When I was diagnosed in July, I visited the GP surgery for tests on a Monday and got results and a telephone call from the GP on the Tuesday. I visted the hospital

by Ben C (Jan 15)

It’s been very uplifting reading a lot of these threads. The positivity and support from you all has been amazingly heartwarming to one another and really assured us on certain concerns. That
Category: Treating CML

Replies: 3

Last updated: 15 January 2019
pc on 26 December 2018

Category: Treating CML

Replies: 12

Last updated: 14 January 2019

Blast crisis
by LabNoir (Jan 14)

I am very sorry to hear about this and my thoughts are with you. I had a friend who went to blast and then failed a BMT so I feel for you l. First, thank you for your tips and I totally agree with

by Justine (Jan 12)

Thanks Ray.

by Ray Sell (Jan 9)

Hi Justine Sorry for the delay in answering. My blood draw was 2 Jan 2019, I will have results next week. I have 3 Dr appointments next week. FUN one, get to see my

by Justine (Jan 7)

Hi Ray, did you get your latest blood results? How is it going?
Category: Treating CML

Replies: 12

Last updated: 14 January 2019
r06ue1 on 11 January 2019

Category: Treating CML

Replies: 1

Last updated: 13 January 2019

CML Drug Prices in the US
by Gitel (Jan 13)

I also seriously doubt Trump and his team will do anything. Talk big but nothing else.
I did hear that two midwestern Senators, Democrat Klobuchar and Republican Grassley are proposing that

by r06ue1 (Jan 11)

Still insanely high in the US and no, I seriously doubt he (Trump) has a solution.

Will the Trump Administration’s Plan to Reduce Cancer Drug Prices Work?
By
Category: Treating CML

Replies: 1

Last updated: 13 January 2019
scuba on 11 January 2019

Category: Uncategorised

Replies: 3

Last updated: 13 January 2019

Baby - it's cold outside
by Ray Sell (Jan 13)

I will post two days this next week and would like your input on both posts. Wellness Dr appointment 16 Jan, Oncology appointment 17 Jan. I read this forum before my email. It'

by scuba (Jan 12)

It woke me up big time. I spend more time reading on heart and overall health than I do CML these days. I am keeping up with immune oncology where exciting breakthroughs are emerging.

by Ray Sell (Jan 12)

Scuba having a heat wave here. 24*f here. As always thank you for the info. I'm really excited for this week as my extensive bloodwork (first time in my 70 yrs) will be back.

by scuba (Jan 11)

It's winter - for most of us. The sun is as low as it can be and doing little to help us maintain Vitamin D.
Any wonder we (not me) tend to get sick with colds and flu in the winter:
https://
Category: Uncategorised

Replies: 3

Last updated: 13 January 2019
cmljax on 9 January 2019

Category: Food & fitness

Replies: 7

Last updated: 13 January 2019

Vitamin D and kidney stones???
by Nimbus2 (Jan 13)

Thank you, Scuba, for finding the reference.
Every two years a retired consultant visits our village and provides PSA testing to all the gentlemen of the village. He also provides presentations and

by scuba (Jan 11)

Nimbus2 - I found a reference citing experimental results yielding the greater than 60% reduction in risk of prostate cancer:
https://www.ncbi.nlm.nih.gov/pubmed/18400723
Perhaps the NHS should look

by scuba (Jan 10)

Absolutely - would love to see their references. I came across this one:
https://www.nutraingredients.com/Article/2008/04/09/Vitamin-K2-linked-to...
and suspect the "60%" figure cited in

by scuba (Jan 10)

Reference range:
(from: https://www.ncbi.nlm.nih.gov/books/NBK250/)
"Calcium is maintained within a fairly narrow range from 8.5 to 10.5 mg/dl (4.3 to 5.3 mEq/L or 2.2 to 2.7 mmol/L). Normal
Category: Food & fitness

Replies: 7

Last updated: 13 January 2019
viksaparli on 11 January 2019

Category: About CML

Replies: 2

Last updated: 12 January 2019

If you are CML, be a semi doctor yourself
by Ray Sell (Jan 12)

I'm sorry for your loss. Sincerely Ray

by AF (Jan 12)

Sorry to hear about your loss. Can you tell us more how he / she died was it due blast crisis ?

by viksaparli (Jan 11)

Here, I want to tell that my nearest person very close to me died due to ignorance of doctors to patient,

So please be careful and change the doctor if you are not feeling well rapidly and
Category: About CML

Replies: 2

Last updated: 12 January 2019