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Vancouvergirl on 4 September 2019

Category: About CML

Replies: 17

Last updated: 8 September 2019

Re: Blood test questions. Newly Diagnosed with CML Aug. 21/2019
by Vancouvergirl (Sep 8)

Hi nk_godvani,
Okay and yes, I under stand everything you wrote.
I very much appreciate your clear explanation as well.
Thankyou.
VG
I'll post back more specifics in regards to my diagnosis,

by nk_godvani (Sep 7)

Hi

Looking your numbers, the fluctuations in wbc is very normal as wbc whould not be constant for a month.

If you have no any other symptomatic infectious disease then it indicates

by Vancouvergirl (Sep 6)

Hi Nimbus 2,
You wrote: My consultant tells me that four measures are of interest from the full blood count for the CML patient: WBC, haemoglobin, neutrophils and platelets.
Me: I linked my

by Nimbus2 (Sep 6)

My consultant tells me that four measures are of interest from the full blood count for the CML patient: WBC, haemoglobin, neutrophils and platelets. Of course, later you will have the Ph+ (Fish)
Category: About CML

Replies: 17

Last updated: 8 September 2019
Mixail on 6 September 2019

Category: Uncategorised

Replies: 1

Last updated: 6 September 2019

DC vaccine.
by David Fitz (Sep 6)

Looks like it's still recruiting - but since it has a target of 30 patients it looks like not much has happened. No interim data or results have been posted. It's aiming to have data in

by Mixail (Sep 6)

What ever happened to the DC vaccine for CML that was being trialed in 2015.

https://clinicaltrials.gov/ct2/show/NCT02543749
Category: Uncategorised

Replies: 1

Last updated: 6 September 2019
onekayaker on 30 August 2019

Category: Uncategorised

Replies: 1

Last updated: 6 September 2019

ALT results after moving milk thistle intake to evening
by Sarah63 (Sep 6)

Your 27 level ALT is normal range right? Sounds like you did the right thing. And so it seems there was something to the Milk Thistle with Bosuliff.

by onekayaker (Aug 30)

I read where there was concern about milk thistle could interfere with bosutinib when ingested together in the forums . I called Pfizer and they said there is no evidence of a
Category: Uncategorised

Replies: 1

Last updated: 6 September 2019
RSTEVENSON824 on 20 August 2019

Category: Drug-food interactions

Replies: 10

Last updated: 4 September 2019

Fish Oil and CML **
by Sarah63 (Sep 4)

ro6ue1,
I’m curious what type of fish oil you were taking before diagnosis. Did it have a combination of EPA and DHA? Or was it only EPA?

by kat73 (Sep 3)

Thanks, Sandy, for this. I was very interested to read the part about how they measure whether the stem cells have been nailed. I wish these two years would hurry up!

by r06ue1 (Sep 3)

I used to take fish oil daily before my diagnosis so I can say it didn't prevent me from getting it.

My first Oncologist told me to stop taking it so I did. The only

by sandy craine (Sep 3)

Try this link... https://clinicaltrials.gov/ct2/show/NCT04006847?term=NCT04006847&rank=1
...if it still doesn't work then search with the trial number i.e NCT04006847 .... that
Category: Drug-food interactions

Replies: 10

Last updated: 4 September 2019
onekayaker on 29 August 2019

Category: Uncategorised

Replies: 1

Last updated: 3 September 2019

LDH levels
by r06ue1 (Sep 3)

My numbers actually went down once I started Imatinib, I don't know if it is from the drug or from eating healthier (still not where I want to be though). Really the only changes I made

by onekayaker (Aug 29)

My chart at MD Anderson range is 135 - 214 U/L. Last blood work went up to 276. Anyone who lowered their lvl by diet I would like to know what they increased and or took away from
Category: Uncategorised

Replies: 1

Last updated: 3 September 2019
Frenchguy on 26 August 2019

Category: Uncategorised

Replies: 12

Last updated: 3 September 2019

Question about Pcr
by Frenchguy (Sep 3)

I call another time the lab to know exactly what was going on and had the head who is camping on her arguments.
She told me a bit more, they took exactly the same amount of dna (not sure of the name

by David Fitz (Sep 2)

I think wIth such a low PCR result you have nothing to worry about. It’s a bit unusuaL. If your results were 0.8% or something you would need to get to the bottom of it, but with your

by Frenchguy (Sep 2)

Ok, so that is inducing that my pcr is not valide if I understand. So I will have to wait for 3 months to see if all is ok.

by David Fitz (Sep 2)

The control gene sample size changes due to the quality of the test. It’s not directly controllable by the lab.
Temperature, age of the sample and all sorts of factors play into it.
I don
Category: Uncategorised

Replies: 12

Last updated: 3 September 2019
saifur360 on 3 September 2019

Category: Side effects

Replies: 0

Last updated: 3 September 2019

Head pain (Back side)
by saifur360 (Sep 3)

I have continue imatinib 400 mg last 2 years 9 months. I also do tension for my financial crisis. I also trying to get a official job.But last one month sometimes I feel a little head pain of back
Category: Side effects

Replies: 0

Last updated: 3 September 2019
Justine on 24 April 2018

Category: About CML

Replies: 16

Last updated: 2 September 2019

Weird cancer (writing therapy)
by David Fitz (Sep 2)

Very nicely written Justine. Sums up how a lot of us feel, or have felt.
It does get easier, as you adapt to your new normal - as I’m sure you’re finding.
But don’t skip your

by Crfharris (Aug 31)

Thank you for saying exactly what I felt just one month ago. Although I feel much better about my prognosis, CML is still the first thing I think of in the morning and last thing before I go to

by Justine (May 9)

Chuck, how did your blood test result come out?

by MartinZA (May 2)

Hi Justine
I just want to thank you for your post - you have summed up what all of us go through on a daily basis and I think it was really courageous of you to put it into words! One quick
Category: About CML

Replies: 16

Last updated: 2 September 2019
Chuckster on 30 August 2019

Category: Blood tests

Replies: 2

Last updated: 30 August 2019

Blood Test
by Chuckster (Aug 30)

Thanks Scuba!

by scuba (Aug 30)

Look forward to seeing your results. I am optimistic for you!

by Chuckster (Aug 30)

Just had blood drawn this morning from LAB CORP.
Four tests: WBC .CMP, FISH(IS) and ABL/BCR Quantatative PCR etc..
Will post results in the next week or so when they come in.
Category: Blood tests

Replies: 2

Last updated: 30 August 2019
ColoradoGuy on 16 August 2019

Category: Side effects

Replies: 3

Last updated: 29 August 2019

Dull Pain In Left Buttocks
by johnw1001 (Aug 29)

Hi there,
Thanks for the update .I think that I know have a better picture of the issues involved if one does not reduce to MMR or when one loses MMR.Some years ago I lost my MMR and the PCR s rose

by ColoradoGuy (Aug 21)

John - Thank you very much for the reply as I sometimes post and never know when I will get info back (it's like fishing, lol).
I have been treated for almost exactly 2 years (two

by johnw1001 (Aug 21)

Hi there,
I am responding because I have had similar issues and it might be interesting to relate these to you.You do not say how long you have been treated for CML nor the PCR scores etc .I do not

by ColoradoGuy (Aug 16)

Just wanted to get everyone's thoughts as I have been feeling a dull pain in my left butt cheek and was wondering if It could be a result of changing to Nilotinib. I had an ultrasound in
Category: Side effects

Replies: 3

Last updated: 29 August 2019
David83 on 29 August 2019

Category: Uncategorised

Replies: 0

Last updated: 29 August 2019

DreamLab - help fight cancer
by David83 (Aug 29)

Hi All,
My friend works for Vodafone and he recently informed me about a new phone app that’s been developed which allows us to use our devices to help cancer research. In short, you download
Category: Uncategorised

Replies: 0

Last updated: 29 August 2019
HKBails on 26 August 2019

Category: Organising your life

Replies: 5

Last updated: 27 August 2019

Essex cml patients
by Felix (Aug 27)

Hello Huma,Us CML ERS positively rattle with the supplements we take,vitamin D 3,vitamin k2,B12,Magnesium,Turmeric,Fish oil ,Selenium look back thru previous posts to find more information about

by HKBails (Aug 27)

Thanks Denise, that’s pretty much how I feel and struggle to get simple day to day tasks done. I feel I need tests but don’t have time so I try to keep going but then it woes me out the

by HKBails (Aug 26)

Thanks for the information that’s really helpful. Glad to hear life does eventually return to almost normal as I’m really struggling at the moment. I will ask my consultant about sprycel

by kat73 (Aug 26)

Couple of things. I was pole-axed by fatigue on imatinib; on sprycel the fatigue was halved, at least. Might be your experience, too. Another hope, if you eventually can reduce
Category: Organising your life

Replies: 5

Last updated: 27 August 2019
DKurup on 23 August 2019

Category: Treating CML

Replies: 2

Last updated: 25 August 2019

Stopped Imatinib under Self Prescription.
by DKurup (Aug 25)

Thank you Alaistair.
I did explore the option to ask for Wockhardt, but the pharmacist kept pushing for Accord (not sure why).
Eitherways, here I am and looking for my first blood test in 2

by AlastairC (Aug 23)

I wonder if it might have been worth trying 200mg of the generic which gave you the least side effect - ?Wockhardt. That would put you on the Destiny protocol which gave a higher chance of

by DKurup (Aug 23)

This one is in continuation to my previous question- https://cmlsupport.org.uk/thread/13192/no-more-sandoz-others-cause-side-... - however thought it is worth a new thread.
After
Category: Treating CML

Replies: 2

Last updated: 25 August 2019
Bmckenna on 22 September 2018

Category: Side effects

Replies: 7

Last updated: 21 August 2019

Has anyone had to stop working due to tki side effects?
by michaelnall1009 (Aug 21)

My sister was diagnosed with CML back in 2010 when she was 46 and was immediately put on Tasigna and had a quick move to remission. However, as you all discuss she did have side effects from

by jab (Oct 8)

I was told potassium and for the most part the leg cramps went away.

by cmljax (Sep 24)

Sorry your TKI is causing so much pain. Side effects often get better with time, but if not, you should discuss switching TKI or if your PCR response is good, reducing dose.

by Philiptibbs (Sep 23)

I have all the same side effects and I'm sorry to say but the only way I cope is Percocet 3-4 times a day and I try and sleep 8-9 hours a night to heal. I do construction and have to work because I'
Category: Side effects

Replies: 7

Last updated: 21 August 2019
Ontasigna on 19 August 2019

Category: Treating CML

Replies: 4

Last updated: 19 August 2019

Hemoglobin dropping consyantly
by Nimbus2 (Aug 19)

Here at the centre of England the range for men is 13.3 to 16.6 g/dL.
I understand that the range for women the top and bottom figures are lower.

by Sueso (Aug 19)

Hi
Hemoglobin Standard Range 11.7 - 16.1 g/dL
Sue

by Ontasigna (Aug 19)

No, I am not sure.
Also I am not aware of "very mild normocytic normochromic anaemia"
Anything to be worried about?

by Nimbus2 (Aug 19)

My HGB has dropped to 111 g/L. My haematologist is virtually certain it is not iron deficiency. Described as "very mild normocytic normochromic anaemia".
Are you sure that your anaemia is
Category: Treating CML

Replies: 4

Last updated: 19 August 2019
Karinne on 9 August 2019

Category: Uncategorised

Replies: 12

Last updated: 19 August 2019

10 months TFR
by Vikram (Aug 19)

Thanks to reply....

by AlastairC (Aug 16)

Hi Vikram, it is just over 9 months since I stopped taking imatinib. I have another blood test next week.
Just to emphasis this is not a quick process. I was MMR for over 9 years on 400mg imatinib

by Vikram (Aug 16)

Hi ALASTAIR
HOW LONG TIME YOU DRUG FREE (TFR)??

by David83 (Aug 13)

Thanks Scuba, that’s great info. Thanks for taking time to research and give us all the info you’ve found.
I think i’ll try K2 along with D3 for a while now. FBC, PCR and biopsy
Category: Uncategorised

Replies: 12

Last updated: 19 August 2019
Crfharris on 17 August 2019

Category: Uncategorised

Replies: 6

Last updated: 18 August 2019

Day 4 on Imatinib
by AlastairC (Aug 18)

I agree with Scuba. Davids Post should be a sticky at the top of the forum as a beginners guide, perhaps with a link to the creation of a new thread to enable the newbie to introduce

by Crfharris (Aug 18)

You’ve done an outstanding job and are providing a great service to those of us who didn’t know what CML was last month.
Thanks!

by David Fitz (Aug 18)

It’s accessible under the “Patient Info” then “Glossary” section too.
I’m planning a bit of a refresh of the Patient Inso section anyway - there’s

by scuba (Aug 17)

David - Excellent! Should be a "sticky".
Category: Uncategorised

Replies: 6

Last updated: 18 August 2019
JacqJohn on 16 August 2019

Category: Treating CML

Replies: 3

Last updated: 17 August 2019

18months into Glivec (Imatinib) - PCR >0.1%
by JacqJohn (Aug 17)

Hi,
im fairly tolerating well in terms of side effects on Glivec (just typically daily loose stools and the standard normal tiredness). Otherwise I’m quite ok. And yes, I’ve

by scuba (Aug 16)

Tasigna and Glivec work the same way in terms of how the drug binds to the active site in CML leading to cell death. Tasigna binds more tightly and is generally more effective than Glivec because of

by AlastairC (Aug 16)

Hi,
How are you doing with side effects on Glivec/Imatinib? I plateaued at about 0.3% for a few months and then got to less than 0.1% in a big jump. I issed the guideline but I didn't know - the

by JacqJohn (Aug 16)

Hi All,
I’ve been on Glivec 400mg for the past 18 months after discovering intolerance to Tasigna during initial diagnosis of CML.
My BCR-ABL results went from 1.4% —> 0.4% and after
Category: Treating CML

Replies: 3

Last updated: 17 August 2019
Sunita Parhar on 16 August 2019

Category: Side effects

Replies: 3

Last updated: 16 August 2019

Ponatinib
by AlastairC (Aug 16)

Sunita you're welcome. Bone Marrow Biopsy is he right thing to do and take decisions when you have the results. Let us know what happens.
Good luck
Alastair

by Sunita Parhar (Aug 16)

Hi Alastair, you’re absolutely right - I got the name of the drug wrong. We are doing a bone marrow biopsy next week to determine mutations. Thank you for the suggestion.

by AlastairC (Aug 16)

Hi Sunita, can you check the name of the drug - I think it may be ponatinib, which is one the recognised newer drugs for CML patients. Also has your husband had any mutation testing done - this

by Sunita Parhar (Aug 16)

Hi, my husband has been on Nilotinib for almost 2 years now but seems to be developing a resistance to it. The doctor has mentioned a drug called Pinotinib as an option. Has anyone been on it? Were
Category: Side effects

Replies: 3

Last updated: 16 August 2019
ThomasS on 14 August 2019

Category: Uncategorised

Replies: 4

Last updated: 16 August 2019

50mg of Sprycel
by AlastairC (Aug 16)

Tom, good call. As long as you don't have an upward drift in the next couple of test results, I think as Scuba says it is perfectly feasible to try 20mg. If you're results are stable below 0

by ThomasS (Aug 15)

Scuba and Alastair, thank you for your reply and all the info. I talked with my Dr and we are going to stay at 50mg and re test in 6-8 weeks. Hopefully the counts will come back to 000. It took me

by AlastairC (Aug 14)

Tom, I'm 100% with Scuba that you don't want to to go back up to 70mg. I have seen this happen on the forum where a lab has a new and shiny piece of equipment which is more sensitive than

by scuba (Aug 14)

Tom,
0.007 is indistinguishable with "undetected" both statistically and in absolute terms. You should continue with your current dose and test again in six weeks to see if there is a
Category: Uncategorised

Replies: 4

Last updated: 16 August 2019