You are here

Forum

Jessicajewel on 27 February 2019

Category: Children & young people

Replies: 1

Last updated: 27 February 2019

Initial blood test results
by bendicco (Feb 27)

Please have the bloods run again and if the same or similar find a good oncologist! Frightening I know but if you do have CML or any other blood cancer you must be treated by an oncologist not you

by Jessicajewel (Feb 27)

Hello, based on some recent blood test results I am wondering if I might have early stages of CML. Could anyone tell me if they had similar results?
my eosinophils were 2666 (range 50-500)
my
Category: Children & young people

Replies: 1

Last updated: 27 February 2019
Tanya Cuffe on 2 February 2019

Category: Uncategorised

Replies: 2

Last updated: 26 February 2019

Bone pain/depression
by sorin real (Feb 26)

I repeat the answer given to Riggered :

I have CML and arthritis in the spine. My wife has knee arthritis.

We both use curcumin supplements for arthrosis and we both feel extraordinarily

by Ray Sell (Feb 6)

Hi Tanya. Your not alone. Having CML is depressing. If I have to have cancer, I'm thankful this is the one I have. I've had tremendous leg cramps, finger cramps, and

by Tanya Cuffe (Feb 2)

Hey friends!Can anyone offer advice on bone pain relief?Am hoping Sprycel switch will help but been using OxyContin,Panadeiene forte and now Targin...Pain relief also aids depression I find...
Category: Uncategorised

Replies: 2

Last updated: 26 February 2019
Chuckster on 30 November 2018

Category: Blood tests

Replies: 5

Last updated: 26 February 2019

Latest Blood Work Results: BCR/ABL-1 Gene, QN PCR
by AlastairC (Feb 26)

Good numbers. Very happy for you.

by Chuckster (Feb 26)

Just back from my Oncologist : Dr. Waina Cheng , Sparta New Jersey. (USA).
She is very happy with my blood test results, achieving MMR!
Diagnosed with CML Feb 12 2018 @ 100.00 and now-

by Chuckster (Feb 23)

*FISH Results from NOV- 2018- 0.000 Not Detected.
Chest X-Ray- no fluid in lower right lung- All Clear.
No Plural Effusion.

Latest Results from this past Monday- Feb 18th 2019
ABL

by Chuckster (Dec 1)

Thank You!
Category: Blood tests

Replies: 5

Last updated: 26 February 2019
Damian Gabilondo on 26 February 2019

Category: Uncategorised

Replies: 0

Last updated: 26 February 2019

LMC and antiboitics
by Damian Gabilondo (Feb 26)

Hello, I wanted to ask the experts who think about the publication I found, I have been reading about these antibiotics in conjunction with TKI for a long time
Thank you
https://spa.
Category: Uncategorised

Replies: 0

Last updated: 26 February 2019
Damian Gabilondo on 25 February 2019

Category: Uncategorised

Replies: 4

Last updated: 26 February 2019

PCR 9 months doubts
by Damian Gabilondo (Feb 26)

Thank you very much Alastair, the truth is that I should be happy about the results, but I let myself be carried away by anxiety, I should be more attentive to this, my oncologist told me that I

by AlastairC (Feb 25)

Damian as David says your progress is great. Trials have shown that sustained period on TKI therapy improves the chance of successfully achieving TFR. First step when you and your oncologist are

by Damian Gabilondo (Feb 25)

Thank you very much for the prompt response, I hope to go ahead and reach 4.5 at some point to try TFR that is my personal goal and that of my doctor at some point, having found 0.028 PCR at three

by David Fitz (Feb 25)

Hi there.
Achieving 0.028% after less than 6 months is an exceptionally good result. An “optimal” result (cf. European Leukaemia Net) would be 0.1% at that time, so you have blown that
Category: Uncategorised

Replies: 4

Last updated: 26 February 2019
sandy craine on 14 January 2018

Category: Other conditions

Replies: 18

Last updated: 26 February 2019

Alternative/Complimentary Therapy
by Ontasigna (Feb 26)

Hi Sandy
Quick question - does taking tumeric along with tasigna causes myelosupression or low wbc?
Is it safe to consume turmeric on tasigna treatment

by sorin real (Feb 25)

In brief: turmeric is the plant. Curcumin is a compound (along with several other hundreds) of that plant, about 2-6% of the plant. In a way, curcumin represents the "power" of turmeric.

You

by Diane CW (Feb 16)

Sorry if I am being a bit daft but do you take Curcumin in tablet form or a powder? I have been searching the internet and can’t find anything that comes in a dosage of grams. Can anyone help

by Phuong Phuong (Feb 16)

Hi Scuba
do you have any information about curcumin with imatinib? is it ok to take curcumin when you are on imatinib?
thank you
Category: Other conditions

Replies: 18

Last updated: 26 February 2019
bendicco on 24 February 2019

Category: Side effects

Replies: 2

Last updated: 24 February 2019

ABCESS RELATED TO GLEEVEC?
by bendicco (Feb 24)

Thanks Eva, last bloods in January were all good. Never had any issues like this before, not pleasant but hoping it isn’t related to the Gleevec. But as we all know when we have anything like

by Evelinka89 (Feb 24)

Hello,
abscesses are formed if phagocytosis does not work properly (mainly neutrophils, NK cells) or in case of presence of agressive pathogenic bacteria. What pathogen is causing this ? I

by bendicco (Feb 24)

Hi all. I have been on Gleevec for almost 3 yrs and recently have had an issue with an abccess on my inner thigh beginning 6 weeks ago . It was lanced 2x, antibiotics for almost 3 weeks.
Category: Side effects

Replies: 2

Last updated: 24 February 2019
Alaina on 13 October 2018

Category: Uncategorised

Replies: 20

Last updated: 24 February 2019

Tasigna and Supplements
by cmljax (Feb 24)

see this link:
https://www.vitacost.com/vitacost-root2-turmeric-extract-curcumin-c3-com...

by Alaina (Feb 22)

Hi Cmljax,
Can you share with me the brand of Curcumin supplement you take? And is Curcumin the same thing as Tumeric spice used in Mediterranean food?

by Alaina (Oct 19)

Scuba,

You need to be a registered consulant or paid educator. My mind is blown with the amount of knowledge you (and others) have and give on these threads. THANK YOU! I'll admit I am

by Alaina (Oct 19)

Denise, Thank you for the advice! I did not know this!
Category: Uncategorised

Replies: 20

Last updated: 24 February 2019
Sarah63 on 23 February 2019

Category: Uncategorised

Replies: 3

Last updated: 24 February 2019

Why no PCR tests with these numbers?
by scuba (Feb 24)

PCR is a measure of bcr-abl activity by CML cells. The more cml cells, the more PCR generally
Blasts are actual cells. There are normal blast cells and leukemic ones. The key is that blast cells

by Sarah63 (Feb 23)

This is very helpful info, Scuba, I’m not panicking at least. My last PCR was 11/28/18 at .32 International Standard. I guess the “Blast” percent is something else (not PCR

by scuba (Feb 23)

HI Sarah,
I followed a similar path to you with imatinib not working for me and then switch to Dasatinib and severe myelosuppression followed. I did not have a mutation test, but my doctor

by Sarah63 (Feb 23)

I changed oncologists last Summer. August PCR was 55%. He increased Gleevec. October was 29%, he was encouraged. November went to 32% along with significant myelosupression so he took me off Gleevec
Category: Uncategorised

Replies: 3

Last updated: 24 February 2019
Ontasigna on 19 February 2019

Category: Treating CML

Replies: 2

Last updated: 24 February 2019

Symptoms of Pleural effusion
by Ontasigna (Feb 24)

Hi Sarah,
Had been to Onc on Friday. Went through Blood test, LFT, Ultrasound and chest x-ray.
Ulteasound showed an reduces spleen of 14 cm (22 cm @dx). No Pleural effusion, lever and pancreas

by Sarah63 (Feb 24)

Any news or update? How you doing? Did you tell your doc?

by Ontasigna (Feb 19)

Hi all,
I have tightness on left lower abdomen since 4 days.
Worrying if it can be Pleural effusion. Please help me with symptoms of pleural effusion.
Apart from tightness/fullness i dont have any
Category: Treating CML

Replies: 2

Last updated: 24 February 2019
chigi on 23 February 2019

Category: Uncategorised

Replies: 1

Last updated: 24 February 2019

My Journey
by Sarah63 (Feb 24)

Hi Chigi,
Thanks for sharing your journey and especially this juncture. I feel myself walking beside you. Following this thread to learn what will come your way in practical response.
Sarah63

by chigi (Feb 23)

Hi Everyone - thought I would give my update incase anyone has any similar experiences to share. It has been a journey for me.
Some history:
Was diagnosed in late summer 2012 at age 38 and was on
Category: Uncategorised

Replies: 1

Last updated: 24 February 2019
Justina on 23 February 2019

Category: Side effects

Replies: 1

Last updated: 23 February 2019

Side Effects
by kat73 (Feb 23)

Yes, unfortunately, Gleevec does significantly lighten skin. It has to do with Gleevec's untargeted effect on melanocyte production (through c-KIT, I think). Nothing to be done about

by Justina (Feb 23)

Good afternoon,

I just want to find out, has anyone experienced hypo pigmentation whilst taking Gleevac?
I take 400mg but I can see that I am becoming lighter.

Even my friends have
Category: Side effects

Replies: 1

Last updated: 23 February 2019
Ros77q on 18 February 2019

Category: Treating CML

Replies: 10

Last updated: 21 February 2019

Stopping dasatinib
by scuba (Feb 21)

Best time is morning to mid day. Avoid taking in the evening as it may interfere with sleep (which makes sense since we evolved to make vitamin D (skin) when the sun is shining).
I wish you all the

by Ros77q (Feb 21)

Thanks scuba
what Would be the best time to take vitamin d3 supplements and with what food. I usually take dasatinib around 6 pm.

by Ros77q (Feb 21)

Hi scuba
when i did my blood test it showed 24% blast Doctor is planning me to ponatinib. Currently im on dasatinib 100 mg. I am so confused right now. I am having my bmt soon.

by scuba (Feb 20)

What is your blast cell percentage currently? As long as your blast cell count is less than 5% you have some time to work through this. Bone marrow transplant is a last resort before trying other
Category: Treating CML

Replies: 10

Last updated: 21 February 2019
Harsh on 8 January 2017

Category: Uncategorised

Replies: 6

Last updated: 21 February 2019

Blast phase cml
by David Fitz (Feb 21)

Hi,
Typically, when a BMT is planned and ponatinib is used it’s used to hit the CML as hard as it can in advance of the transplant. This is to reduce the amount of disease in your system so

by Ros77q (Feb 21)

Hi sandy
after reading your post i feel little relief. I have cml and first started with imatinib. Later cml progress to blast phase. After that i was put on dasatinib and achieve second

by Harsh (Mar 5)

Hi sandy,

After your advice I spoke to my oncologist about BMT .He told to wait for for my 3rd month pcr test.If Iam in 2nd chronic phase we may go for BMT and if the blasts are less than 10%

by sandy craine (Jan 21)

Hi,
I am sorry you have been diagnosed in Blast Phase CML.... Most CML specialists treat CML in BP by first trying to get you back to a second chronic phase and at the same time looking to
Category: Uncategorised

Replies: 6

Last updated: 21 February 2019
Tanya Cuffe on 17 February 2019

Category: Uncategorised

Replies: 9

Last updated: 20 February 2019

can I go back?
by Tanya Cuffe (Feb 20)

My doc said I can go back as am feeling so awful so hope to God it’s ok to do so!Thank for trying help me!

by Evelinka89 (Feb 20)

Hello,
I accidentaly found a research article from 2017 stating, that switching back from 2nd generation to imatinib is possible, but after achieving (do not remember which type... I think CMR

by Tanya Cuffe (Feb 19)

Thank you,friend am going off Sprycel is affecting my mental state dreadfully no matter what anyone says...can cope with Glivec sides and am grateful for it as long as it’s still working...

by ThomasS (Feb 19)

Tanya I am on Sprycel now. The Gleevec stopped working after about 8-9 years. The 100mg of Sprycel was really tough with all the side effects and not sleeping. On 70mg now and the side effects
Category: Uncategorised

Replies: 9

Last updated: 20 February 2019
RC Kirk on 20 February 2019

Category: Clinical trials

Replies: 1

Last updated: 20 February 2019

Scuba, this sounds a little phishy to me. What do you think?
by scuba (Feb 20)

It is 'fishy' - and of course diving surrounds you with fish (if you're lucky).
Actually - I know of one couple who went diving every data twice a day in their retirement. They

by RC Kirk (Feb 20)

This was posted on the LLS forum. Seems a little suspect to me. I thought maybe you could try it out the next time you go diving.

Barindelli February 01, 2019 at 7:43am
Nitrogen
Category: Clinical trials

Replies: 1

Last updated: 20 February 2019
scuba on 2 February 2019

Category: Uncategorised

Replies: 4

Last updated: 20 February 2019

Fasting and Cancer (additional information)
by scuba (Feb 20)

Thomas,
I use ketone sticks to measure ketone levels. I enter ketosis after a day fasting. I will remain in ketosis after starting food again as long as my carb load is less than 20-30 grams. In any

by thomas.c (Feb 20)

Hi Scuba,
3 days might not be enough. In Dr Seyfried’s book recommend to start with 7 days if you are coming off from a regular “american diet”. Even that is just a broad guess. As

by scuba (Feb 19)

Thomas - Great to read your personal experience with this approach.
Of course you know there is no difference between 0.0019 and 0.0031 PCR .... Anything below 0.01% is indistinguishable from PCRU

by thomas.c (Feb 19)

I actually tried a very strickt keto diet and it doesn’t seem to have effect on my cml.
I was diagnosed 1.5 years ago, i’m in MR4.5 now, and taking 100mg dasatinib. I’m 33 years
Category: Uncategorised

Replies: 4

Last updated: 20 February 2019
Lucky Utubor on 19 February 2019

Category: Blood tests

Replies: 4

Last updated: 20 February 2019

BCR-ABL increase
by RC Kirk (Feb 20)

It will be interesting to see what the result is at your usual lab. Hopefully it's just a fluke and your next test will be back to normal.
Do you usually get a copy of your BCR/ABL1 report

by Lucky Utubor (Feb 20)

Honestly I don’t know but I would ask.

by Lucky Utubor (Feb 20)

Honestly I don’t know but I would ask. My full blood count is normal only the wbc is a little higher 7.3 but still within normal range. Am dead scared .

by RC Kirk (Feb 19)

Yes, your BCR/ABL1 should be retested. Does your lab report the result in the International Scale (IS%)?
Category: Blood tests

Replies: 4

Last updated: 20 February 2019
Jared on 19 February 2019

Category: Uncategorised

Replies: 1

Last updated: 19 February 2019

17 years with CML
by Job Guerra (Feb 19)

Jared,
Hello and congrats on 17 years. I imagine that anyone close to that got on TKI's very soon after they were approved. I'm sure many of us on the site have wondered

by Jared (Feb 19)

Hello their,
My name is Jared.......ive had cml since I was 17 and now im 35......was on interferon then gleevec and now sprycel..........I feel pretty good but as you know you can have your off
Category: Uncategorised

Replies: 1

Last updated: 19 February 2019
Ontasigna on 19 February 2019

Category: Treating CML

Replies: 4

Last updated: 19 February 2019

Need advice : urgently
by Ontasigna (Feb 19)

Thanks so much Eva. Appreciate your support and suggestions

by Evelinka89 (Feb 19)

Your Hb is fine then ( I suppose it is quite recent result). If you won't get yellowish or feeling worse, it it is ok to wait until friday. It is quite uncommon during therapy, but could happen

by Ontasigna (Feb 19)

Thanks Eva.
Yes, my indirect bilirubin is 4.8 mg/dl. Urine and eyes are normal in color.
I infact all of a sudden have lost appetite since 4 days n feel full after eating a little. Hemolysis?

by Evelinka89 (Feb 19)

The best and most accurate way is to do an abdominal ultrasound. Physical examination is quite useless as it can detect just enlarged spleen and only if it is at least twice as normal size.
I
Category: Treating CML

Replies: 4

Last updated: 19 February 2019