You are here

Forum

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
Charlawr22 on 3 January 2019

Category: Uncategorised

Replies: 15

Last updated: 11 January 2019

When to start treatment
by Richard42 (Jan 11)

Interesting thread and discussion. I can only offer my own anecdotal experience. I was diagnosed in May 2009, with absolutely no symptoms, following a blood test (which was done for the

by Nimbus2 (Jan 9)

Thank you, Scuba, for providing the various references to the proposition that CML could be in place for 5 to 10 years before the white blood still count starts to rise.
I have been carrying out

by kali (Jan 6)

Hi Sandra!
i read the link you posted. So does it mean that if someone successful stops their TKI with no recurrence of cml that they can still relapse sometime years later?

by Nimbus2 (Jan 6)

Thank you, Alistair.
At the outset of my career, I worked in a microwave radio laboratory which is probably of no great interest. However,1998 to 2001 I worked in an office that was 3 metres away
Category: Uncategorised

Replies: 15

Last updated: 11 January 2019
Riggered on 28 November 2018

Category: Treating CML

Replies: 6

Last updated: 10 January 2019

Had achieved MMR but lost it
by bendicco (Jan 10)

FYI the pharmacist at Sloan suggested I stay away from any mushroom supplements, don’t know to if that is only with Gleevec. You might want to check it out.

by alliswell (Dec 12)

as i said in my thread
maybe this will be useful for other patients , especially if they were just searching just pcr results for a relief like me months before . i will update after every

by Riggered (Nov 29)

Hi Kat,
Yes we sure do love the trend....when its downward. Like you say.....will see what the next couple of PCR's look like.
Onward to .00000

by Riggered (Nov 29)

Thanks Scuba....
I had my Vitamin D level checked about 3 months ago. It was 74 ng/ml
My daily supplement list:

"Liquid Vitamin D3 with K2". 125 mcg D3 (as Cholecalciferol),
Category: Treating CML

Replies: 6

Last updated: 10 January 2019
Alaina on 9 January 2019

Category: Uncategorised

Replies: 2

Last updated: 10 January 2019

Vitamin D and Platelets
by Alaina (Jan 10)

This is motivating. Thanks.

by scuba (Jan 10)

Your Vitamin D level was 13.9 - that is very low (below rickets level). Vitamin D is vital for blood homeostasis. . It's very likely getting your vitamin D elevated is helping your blood system

by Alaina (Jan 9)

During the last 2 and a half years of treatment my platelet count has continued to increase at every 3 month check up. I had my vitamin D level checked in October and the result was 13.9 if I
Category: Uncategorised

Replies: 2

Last updated: 10 January 2019
sg3 on 2 June 2017

Category: Uncategorised

Replies: 7

Last updated: 9 January 2019

Tasigna and the fasting the period
by cmljax (Jan 9)

I have been on Tasigna 150 mg/1x/day (25% of starting dose) for 18 months now and I have never once considered violating the fast period. I must admit that 1 fast period per day is easier than

by RC Kirk (Jan 9)

The NIFO Study: Paper 118149 abstract 235915 0
At this year’s ASH 2018 congress, a poster on the “NIFO Study” (NIlotinib with FOod), conducted by the academic Amsterdam

by grells (Jul 6)

I was diagnosed in March 2016 and have had a great response to Nilotinib. My BCR-ABL is "virtually undetectible" and my molecular response is 4.5. Honestly, I think I have ignored my

by David Fitz (Jun 5)

During the fasting periods, the official guidance on the Tasigna leaflet is:
"Tasigna should be taken twice daily at approximately 12-hour intervals and must be taken on an empty stomach
Category: Uncategorised

Replies: 7

Last updated: 9 January 2019
sandy craine on 5 December 2018

Category: Treating CML

Replies: 27

Last updated: 9 January 2019

20 years since diagnosis
by Richard42 (Jan 9)

Sandy
Belated congratulations on this milestone - I've not been on the forum for some weeks so just seen this thread.
Many thanks for your help and insight over the past nearly 10 years (

by sharon morris (Dec 29)

Hi Sandy,
Huge congratulations on this wonderful milestone!!! You were such an inspiration and a lifeline to me when I was first diagnosed. So much wonderful help in those awful first months. Many

by Felix (Dec 26)

Hi Sandy ,congratulations on your 20 year anniversary you give us all hope.I just read you are from Liverpool I live just over the water on the Wirral.Do you attend RLUH if so are there a few

by MartinZA (Dec 21)

Dear Sandy
I can't believe your incredible story. You are an inspiration to me and a constant reminder that it is possible to live a good and long life with this condition. Thank you
Category: Treating CML

Replies: 27

Last updated: 9 January 2019
JS001 on 1 January 2019

Category: Treating CML

Replies: 5

Last updated: 9 January 2019

Help - Nilotinib fourth line or retry Dasatinib?
by cmljax (Jan 9)

Yes, since 150 mg is the smallest dose available, I take it once a day in the AM, so I don't have to worry about fasting in the evening and at night. Tasigna in in capsule form, so you

by JS001 (Jan 8)

Hi cmljax,
Thanks for your reply. It’s really great news and reassuring to read that you have had such a good response on Nilotinib. I know I am likely to have to switch to Nilotinib in future

by cmljax (Jan 8)

I'm a bit surprised that Scuba hasn't chimed in on this yet, but if he does, he will tell you that there is some evidence to suggest that dasatinib doses less than 100 mg are actually more

by JS001 (Jan 8)

Hello everyone,
I decided to restart on 100mg Dasatinib last Friday in the absence of any conclusive data for previously treated patients. I also felt uncomfortable taking a lower dose than
Category: Treating CML

Replies: 5

Last updated: 9 January 2019
bendicco on 8 January 2019

Category: Treating CML

Replies: 2

Last updated: 9 January 2019

Gleevec has run it's course
by bendicco (Jan 9)

Thanks for your response. Stay well.

by cmljax (Jan 8)

Your options are Sprycell, Tasigna and Bosulif. I only have experience with Tasigna, which has worked very well on my CML. I had a bunch of not so typical side effects that have mostly

by bendicco (Jan 8)

Hi all, so good to have this resource and all your input!
I have had CML for almost 3 years, + for Philadelphia gene, and been on Gleevec 400 daily (generic) aside from an initial week or so on
Category: Treating CML

Replies: 2

Last updated: 9 January 2019
blueyes74 on 13 December 2018

Category: About CML

Replies: 8

Last updated: 8 January 2019

Treatment Free Remission
by cmljax (Jan 8)

We're all rooting for you. Keep us posted please. I haven't been on treatment long enough to try TFR, but hoping I still qualify when the time comes.

by kali (Jan 8)

That is great news! I am always happy to hear with someone can go treatment free! I wish you continued non detectable results!

by DawnD (Dec 15)

Great News Blue!!! Congrats!! I am hoping eventually for the same:):)

by blueyes74 (Dec 13)

I never really had cramp. My toes used to curl up when cold now and again but that was in the early years.
I still get cold hands and often think they're cold when infact they're warm
Category: About CML

Replies: 8

Last updated: 8 January 2019