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Tanya Cuffe on 5 June 2019

Category: Uncategorised

Replies: 2

Last updated: 6 June 2019

Sprycel 6 days in...
by Tanya Cuffe (Jun 6)

Thank you for that,David,am being overly paranoid as per usual :) I worry bout everything ,currently taking Hormone Replacement and Antidepressants to try deal with life but they also get me worried

by David Fitz (Jun 6)

I don't think it's true to say you can't get a pleural effusion on 50mg, but it is much less likely than on higher doses.
Here are some symptoms of PE. Basically, the fluid around

by Tanya Cuffe (Jun 5)

Hey guys!Have been taking Sprycel nightly,50mg,with little or no sleep for past 6 days. Taking magnesium,tumeric,Vit.D plus starting HRT for menopause induced by Gleevec.My question is this,have
Category: Uncategorised

Replies: 2

Last updated: 6 June 2019
scuba on 5 June 2019

Category: Uncategorised

Replies: 2

Last updated: 5 June 2019

Vitamin D & Leukemia
by scuba (Jun 5)

Make sure to take vitamin K2 along with D(3) as K2 uses D in calcium mobilization. Hard to overdose on D when K2 is available.
I hit 100 also late last year by September without knowing it (wasn

by onekayaker (Jun 5)

Hey Suba,
I recently went for a blood workup and everything looked good but my Vit D was just over 100. I adjusted it down 2,000 UI. My D level was at 57 taking 6,000UI so I went to 10,

by scuba (Jun 5)

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0144308
https://www.sciencedaily.com/releases/2016/01/160106125203.htm
Low Cloud Cover-Adjusted Ultraviolet B Irradiance Is
Category: Uncategorised

Replies: 2

Last updated: 5 June 2019
stefanolucas on 3 June 2019

Category: Treating CML

Replies: 4

Last updated: 5 June 2019

TP 53 mutation
by scuba (Jun 5)

Regarding Prima-1
https://academic.oup.com/biohorizons/article/doi/10.1093/biohorizons/hzv...

by Sarah63 (Jun 5)

I don’t know if this link will work, but here is information on P-53 that I have been studying over the past 6 months.

https://genomediscovery.org/2018/11/cancer-therapy-targeting

by stefanolucas (Jun 5)

Thank you scuba for your response !
i read about this TP53 mutation and i saw there exist a molecule named PRIMA-1 that can solve our problem ! Does anyone know something about this molecule ?

by scuba (Jun 3)

TP53 mutation is associated with both chronic phase and blast phase of CML. It could very well explain her early difficulty. The good news is that her CML reverted to chronic phase and is
Category: Treating CML

Replies: 4

Last updated: 5 June 2019
saifur360 on 3 June 2019

Category: Treating CML

Replies: 2

Last updated: 5 June 2019

Is it possible to turn from cml to aml?
by saifur360 (Jun 5)

Thank you

by David Fitz (Jun 3)

CML can progress to "blast crisis", which is similar to AML in many ways. But this is not that common really and usually occurs when someone has been diagnosed very late when the disease

by saifur360 (Jun 3)

My diagnosis is Chronic Myeloid Leukemia in Chronic Phase.
At first my blast was 5% but now it is 00%
My pcr is 0.033
Is it possible to turn AML or other leukemia?
Category: Treating CML

Replies: 2

Last updated: 5 June 2019
jriccoboni on 4 June 2019

Category: Uncategorised

Replies: 2

Last updated: 5 June 2019

Updated PCR Results
by jriccoboni (Jun 5)

Thanks Dave

by David Fitz (Jun 4)

Congratulations. On ELN guidelines that is an optimal response! Can't ask for much more than that.
David.

by jriccoboni (Jun 4)

Rabbit turned to Turtle?
Got my 9 months results back.
Diagnosed 8/17/2018
PRC at diagnosis: 58%
100 mg sprycel
1 month: 17 %
3 months: 0.19 %
6 months: .16 % ( took the test after working out
Category: Uncategorised

Replies: 2

Last updated: 5 June 2019
Nimbus2 on 3 June 2019

Category: Uncategorised

Replies: 0

Last updated: 3 June 2019

Flumatinib Shows Promise in Chronic-Phase Chronic Myeloid Leukemia
by Nimbus2 (Jun 3)

Another TKI under clinical evaluation.
Flumatinib — a derivative of imatinib — may have superior efficacy compared with imatinib as frontline treatment in patients with 26chronic myeloid
Category: Uncategorised

Replies: 0

Last updated: 3 June 2019
kali on 31 May 2019

Category: Uncategorised

Replies: 3

Last updated: 3 June 2019

Magnesium
by scuba (Jun 3)

RBC = red blood cell test.... it is not a magnesium test.
Magnesium test will say magnesium or Mg.

by kali (Jun 3)

Thanks Scuba! I started Calm which is the citrate version.
I read that the blood test which detects low magnesium is the RBC.
Not sure if I should ask for that test. I do know my aching

by scuba (May 31)

"Can magnesium be low even though serum magnesium is in the normal range?"
Yes. Magnesium (along with calcium) is a critical electrolyte our plasma (circulatory system/ tissues)

by kali (May 31)

Hello to all!
Can magnesium be low even though serum magnesium is in the normal range?
Does Sprycel affect magnesium and potassium levels?
Category: Uncategorised

Replies: 3

Last updated: 3 June 2019
johnw1001 on 3 June 2019

Category: Food & fitness

Replies: 1

Last updated: 3 June 2019

Lifestyle after cancer
by David Fitz (Jun 3)

Hi John,
Though I posted the conference report, it was actually Nigel Deekes who went this year. With my twins now home and keeping us pretty busy I wasn't able to go this year. Usually both

by johnw1001 (Jun 3)

hi All,
In his report on the recent CML Advocates conference David highlighted the second edition of the book by Professor Robert Thomas titled "Lifestyle after Cancer" .This is a topic
Category: Food & fitness

Replies: 1

Last updated: 3 June 2019
Tanya Cuffe on 27 May 2019

Category: Uncategorised

Replies: 14

Last updated: 2 June 2019

Sydney recommendations?
by Tanya Cuffe (Jun 2)

Thank you friend,yes it is an amazing place and once again,am grateful for your support and advice!Gotta make the most of everything I guess,and be thankful😊❤️🙏🏻

by Felix (Jun 2)

Hiya,when I was going thru the menopause all I had was the occasional hot flush used to carry a small battery fan haha .The night sweats were a bit of a bugger so cotton nighty and cotton sheets

by Tanya Cuffe (Jun 2)

Thank you Denise,you are very sweet and kind to get back to me so quickly.Did you not have any menopausal things going on?I do take magnesium but will lessen coffee and not going take HRT.Going

by Felix (Jun 2)

Hiya Tanya ,you really are having a hard time .Sprycel has had no effect on me regarding sleep ,are you taking magnesium about an hour before bed as that can help with sleep.Do you have caffeine if
Category: Uncategorised

Replies: 14

Last updated: 2 June 2019
Nimbus2 on 31 May 2019

Category: Uncategorised

Replies: 1

Last updated: 1 June 2019

'Dying to Survive'('Wo bu shi yao shen'): Film Review
by Nimbus2 (Jun 1)

A news review here. An interesting discussion.
https://www.youtube.com/watch?v=-uXbkiaEvuA

by Nimbus2 (May 31)

I found this while searching for something else. A film about imatinib. Extract below.
https://www.hollywoodreporter.com/review/dying-survive-1214786
Produced by hit-maker Ning Hao and directed by
Category: Uncategorised

Replies: 1

Last updated: 1 June 2019
Nimbus2 on 19 May 2019

Category: Uncategorised

Replies: 3

Last updated: 31 May 2019

UK Only >>> Yellow Card Scheme
by Nimbus2 (May 31)

I received today a prompt and long response from the MHRA.
They asked me for more information but did explain why different generics may cause varying side-effects. I did not learn much from this

by Nimbus2 (May 28)

Hello John. Thank you for replying.
This is a difficult subject. Some clinicians argue that the generics are absolutely equivalent but from the various forums I can see that patients are claiming

by johnw1001 (May 28)

Hi Stephen,
With regard to your posting I am curious as to whether the Accord generic imatinib is creating a different side effect profile for you from other generics and different to the

by Nimbus2 (May 19)

I discovered from a patient medication leaflet that there is a scheme for reporting side-effects from drugs.
I have reported Accord imatinib using the scheme. I believe that the patient is promised
Category: Uncategorised

Replies: 3

Last updated: 31 May 2019
Mick E on 8 May 2019

Category: Side effects

Replies: 8

Last updated: 30 May 2019

Bosutinib treatments temporarily stopped
by Mick E (May 30)

Steff thanks for the supplement recommendations, milk thistle may be a good choice if liver function is going to be troublesome!
I have restarted meds but now on 400mg and have to have liver test in

by onekayaker (May 30)

Oh yes and I take 2 of the 175mg milk thistle a day for the liver counts.

by onekayaker (May 30)

Oh yes and I take 2 of the 175mg milk thistle a day for the liver counts.

by onekayaker (May 30)

Mick,
Scuba a very active member here has great posts on supplements for joint pain. 400 mg of Magnesium taurate a day is one. I take the D3 with K2 (MK-4 plus MK-7), B12 and a
Category: Side effects

Replies: 8

Last updated: 30 May 2019
jasonswife1686 on 28 May 2019

Category: Uncategorised

Replies: 4

Last updated: 30 May 2019

Update.
by onekayaker (May 30)

Best of luck and prayers to you.

Stephanie

by Job Guerra (May 30)

You and Jason have been on my thoughts and I have shared your story with a prayer group I meet up with (because you asked for prayer). I know it is hard and at times seems hopeless. I

by jasonswife1686 (May 29)

Edited post / update.
The reasoning for the ultrasound of the spleen is because it has to be a certain size for some new medications they want to start. They want to start a medication to help my

by RC Kirk (May 28)

Hi Sarah,
It's good to hear that you got a little bit of good news from your biopsy. I'm hoping that Dr. Druker and the folks at Mayo can help with some insight and that you can get
Category: Uncategorised

Replies: 4

Last updated: 30 May 2019
Toni on 29 May 2019

Category: Uncategorised

Replies: 4

Last updated: 29 May 2019

Nilotinib and hair dye
by Toni (May 29)

Thank you Debbie. I think as soon as you say cancer treatment they all run scared. I’ve just found a hairdresser who has done a skin test and taken a hair swatch to test so just need to wait

by debsydoo (May 29)

I’ve been on Nilotinib from September and had my hair dyed twice by my hairdresser of more than 10yrs. Because I felt my scalp was a bit sensitive on the first trip he just used foils

by Toni (May 29)

Oh, thank you David. But I am petrified of the hairdressers as it is and I would be mortified if it all went horribly wrong and it was my fault for not telling them in the first place!

by David Fitz (May 29)

By not telling them, to be honest. In the same way I wouldn't tell the massage therapist if they asked me.
David.
Category: Uncategorised

Replies: 4

Last updated: 29 May 2019
Sarah63 on 25 May 2019

Category: Treating CML

Replies: 2

Last updated: 25 May 2019

WBC low after 2 wk break from sprycel
by Job Guerra (May 25)

Apologies about Mayo clinic I was thinking of another thread. Still same comment regarding the rest though.

by Job Guerra (May 25)

Sarah - I'm not sure how long it takes for WBC to rebound/start climbing again after no TKI but I can say that many of my WBC have come in at 2.9 or around there and I continue taking them without

by Sarah63 (May 25)

It worries me that my WBC count remains low (3.3), after 2 week break from Sprycel. HGB also low (11.8) but RBC and PLT good. Why isn’ WBC bouncing back? Also, I still feel
Category: Treating CML

Replies: 2

Last updated: 25 May 2019
Che Mahilom on 24 May 2019

Category: Drug-drug interactions

Replies: 1

Last updated: 25 May 2019

Hi Levs
by Sarah63 (May 25)

There is a Facebook Group named “CML International Network Journey to a Cure” where this question about finding TKI in India and the Philippines comes up often. You may both want

by Che Mahilom (May 24)

My mom needs Imatinib 100 mg, but it is very expensive in philippines. I try to search for the cheapest price or the manufacturer and i found this site discussing about the medicine. Its very
Category: Drug-drug interactions

Replies: 1

Last updated: 25 May 2019
Aroura111 on 22 May 2019

Category: Blood tests

Replies: 12

Last updated: 25 May 2019

Anyone have a PCR result above 100% at diagnosis?
by Sarah63 (May 25)

Scuba,
This is of very high interest to me: (quoting you):
“ Random testing of healthy people showed 10% had bcr-abl detected (i.e. 0.01%) p210 clone with no disease...”
“...

by scuba (May 24)

Know that the "7" is a likely place holder and not a real number. PCR values below 0.01 are noise at best. It is indistinguishable from PCRU ("undetected"). Labs will often put

by RC Kirk (May 24)

I received my latest PCR score last week and it was .007% IS. I've been alternating 20mg Sprycel with imatinib for the last year or so. I think I'll take 250mg imatinib for the

by scuba (May 24)

RCKirk:
This is your diagnosis status:
"Yes, my PCR score was above 100%.
PCR - p210 transcript 118.7% IS
FISH - 93%
cytogenetics - t(9;22) translocation in all 20 of the metaphases examined
Category: Blood tests

Replies: 12

Last updated: 25 May 2019
Sarah63 on 23 May 2019

Category: Treating CML

Replies: 5

Last updated: 24 May 2019

Any problem cutting tablets?
by RC Kirk (May 24)

I concur with David and Kat. I've done it and lived to tell about it.
I've even quartered 100mg tablets, but it takes patience to get them lined up just right in the pill splitter.
I

by kat73 (May 24)

(Head nodding in agreement - good idea.)

by David Fitz (May 23)

I agree with you Kat, against the manufacturers guidance. Maybe the best way to do it would to be to make sure to take each half of a pill on consecutive days, ensuring you at least are getting the

by kat73 (May 23)

I did it. Nobody told me not to. I got a pill-cutter box at the pharmacy and it was easy. I did try hard to align each pill correctly in the box so as to make an exact half cut; I
Category: Treating CML

Replies: 5

Last updated: 24 May 2019
Jason Graves on 23 May 2019

Category: Uncategorised

Replies: 2

Last updated: 23 May 2019

No bone marrow
by RC Kirk (May 23)

https://www.ncbi.nlm.nih.gov/pubmed/2239919
One of the listed reasons for it is that you have CML. Low platelets is also frequently seen in patients with dry taps.
If I'm reading it

by Sarah63 (May 23)

I have wondered this also as my BMB came up “dry” in 2012, which I assume means the same thing. I know I’ve still got bone marrow though, cause I’m still ticking. I so

by Jason Graves (May 23)

What does it mean with the bone marrow is empty?
Category: Uncategorised

Replies: 2

Last updated: 23 May 2019
Philiptibbs on 29 March 2018

Category: Treating CML

Replies: 20

Last updated: 22 May 2019

Very Scared and Confused...
by Philiptibbs (May 22)

I'm seeing my Doctor June 3rd and asking to be switched to Sprycel .

by cmljax (May 21)

Have you talked to your doc about switching TKI's. Sprycel would be my first choice because Tasigna is more like Gleevec than Sprycel, so Tasigna might cause the same pain. Also, if

by Philiptibbs (May 16)

They also say opioids are bad and I agree but no one has an answer for why my muscles hurt so bad and how to get rid of the bone pain and my ribs hurt and lower back and mt legs are very weak . They

by Philiptibbs (May 16)

I felt better when I was taking the pain pills but know they are no good for me and thats why I reduced the amount I'm taking . If my back and ribs and legs didnt hurt so much Id get off them
Category: Treating CML

Replies: 20

Last updated: 22 May 2019