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Anna.h on 18 April 2019

Category: Getting help

Replies: 2

Last updated: 19 April 2019

Low platelet and wbc while on Nilotinib
by Anna.h (Apr 19)

Thanks alot for your reply.

He experienced pain for some months before the fracture, but unfortunately no doctor recognized it was because of a tumor, even his oncologist!

The only

by Job Guerra (Apr 18)

Naturally it is necessary to get back on the medication as soon as possible but I was wondering what they decided to do about the tumor? Did they call this a chloroma or myeloid sarcoma?

by Anna.h (Apr 18)

Dear all,

Hi,
My father was diagnosed with cml 12 years ago and was on Imatinib, but 8 months ago he had a fracture in his right tibia due to a tumor. Doctors guessed his tumor might be
Category: Getting help

Replies: 2

Last updated: 19 April 2019
VioS on 17 April 2019

Category: About CML

Replies: 9

Last updated: 18 April 2019

Tasigna after imatinib, i can not reach Mr 4, please to advised me
by Lucas (Apr 18)

Hi, vios. Hope you're fine. First of all: i would like to have another pcr before any change if i were you. Your pcr's still lower than your last pcr on imatinib and maybe the 0.011% was a

by David Fitz (Apr 18)

I’d get a new doctor if I were you. Nilotinib is tough on the heart, especially at high dose. I’d take pleural effusion over that, any day. Have a search on this site for pleural

by scuba (Apr 18)

Kat - Excellent summary from someone who has had pleural effusions and is successfully taking low dose dasatinib with continued great response. Look forward to you reporting your "6"

by kat73 (Apr 18)

Definitely get a second opinion, from a CML expert. If dasatinib were that dangerous I don't think so many of us would be taking it successfully. And yes, some of us with pleural
Category: About CML

Replies: 9

Last updated: 18 April 2019
Ontasigna on 15 April 2019

Category: Side effects

Replies: 5

Last updated: 17 April 2019

Severe stomach pain
by David Fitz (Apr 17)

My other post provides more detail, but yes it will reduce your absorption of nilotinib. However, for 10 days only I would not be concerned. Long term use is the problem.
David.

by onekayaker (Apr 17)

My understanding is that it interferes with absorption of TKIs. There is a time span between taking them. Pull up the info of your drug on line or the paperwork supplied with the

by Ontasigna (Apr 16)

Hi all,
Visited GE today, he says pain may be due to bacterial imbalance.
He prescribed me to take antacid for 10 days and live -Probiotics for 10 days.
Question - would taking antacid (

by Felix (Apr 15)

Hi, if pain is in the lower right hand side of your abdomen it could be your Appendix ,please don't wait any longer if it is ,Good Luck ,Denise.
Category: Side effects

Replies: 5

Last updated: 17 April 2019
Karinne on 12 April 2019

Category: Uncategorised

Replies: 6

Last updated: 17 April 2019

Follow-up on Sprycel related pleural effusion
by onekayaker (Apr 17)

Great!!!

by Karinne (Apr 13)

I want to thank you all for your support and tons of informations. It really helps me to be comfortable during this period of uncertainty.
I don’t know how long I could stay off the drug but I

by kat73 (Apr 13)

Hurray, Karinne!

by kali (Apr 13)

Karinne,
Great news!!! That is wonderful that your BCR ABL1 has stayed low.
I am happy to hear no plueral effusion!
Category: Uncategorised

Replies: 6

Last updated: 17 April 2019
Mixail on 15 April 2019

Category: Drug-drug interactions

Replies: 3

Last updated: 16 April 2019

Clinical trials in UK
by Mixail (Apr 16)

Thank you fingers crossed.

by Mixail (Apr 16)

Thank you fingers crossed.

by r06ue1 (Apr 16)

I believe that University of Glasgow is doing trials now, not sure what drug/drug combination they are using but the results looked very promising in mice.

by Mixail (Apr 15)

Hello all, I read a post from City of Hope saying that there where clinical trials of a drug similar to Miristen in the UK this year. Does anyone know anything about this it was posted on city of
Category: Drug-drug interactions

Replies: 3

Last updated: 16 April 2019
Sando on 16 April 2019

Category: Uncategorised

Replies: 4

Last updated: 16 April 2019

What information do I need to ask for from consultant?
by Sando (Apr 16)

Thank you!

by scuba (Apr 16)

Here is a very good reference on CML:
https://www.nccn.org/patients/guidelines/cml/index.html

by Sando (Apr 16)

Thats great David thank you.
We did ask about further bone marrow tests and he said not normally.
We also know that her platelets and red blood cells were normal (suppose the meds could alter that

by David Fitz (Apr 16)

Hi Lisa,
The bone marrow tests are the ones you should focus your questions on. Here's what I'd ask:
What form of CML is it and was any mutation testing done?
Likely answer is
Category: Uncategorised

Replies: 4

Last updated: 16 April 2019
fiona vaughan on 14 April 2019

Category: Uncategorised

Replies: 3

Last updated: 15 April 2019

Running
by Vijay Kumar Verma (Apr 15)

Wow,just amazing. Are you using runtastic apps?i would like to connect with runners with cml.i recently started running.

Wishing you all the best.

Vijay

by Alaina (Apr 14)

This is just amazing to me. My mind is blown. Congratulations!! Can u share how you trained? If I could get back to jogging 3 miles a day while on TKI, I'd consider it a miracle.

by David Fitz (Apr 14)

Wow, congratulations Fiona - that’s amazing.
I’d be impressed with myself running for the bus these days, so a half-marathon is incredible.
David.

by fiona vaughan (Apr 14)

5 months on treatment with nilotinib and four months post stress fracture of my pelvis following my bone marrow biopsy I have just completed a half marathon in Vienna this weekend. It was a
Category: Uncategorised

Replies: 3

Last updated: 15 April 2019
Adelaide Gomes on 14 April 2019

Category: Treating CML

Replies: 1

Last updated: 15 April 2019

Heart Issues
by David Fitz (Apr 15)

Hi Adelaide,
Are your doctors certain this has happened since your were diagnosed? Or, is it possible you've had this left atrium enlargement for some time before?
It's not an issue I have

by Adelaide Gomes (Apr 14)

Hi Everyone, I am a CML patient, and was diagnosed with left atrium enlargement. Does anyone here have heart issues? I have taken Gleevec 300 mg. for 5 years, our miracle drug. Is this reversible?
Category: Treating CML

Replies: 1

Last updated: 15 April 2019
Damian Gabilondo on 10 April 2019

Category: Uncategorised

Replies: 3

Last updated: 15 April 2019

Hepatic toxicity Nilotinob
by David Fitz (Apr 15)

Try that link again - I've edited it to correct it.
Fasting is indeed a difficult one. For that reason, I oped for dasatinib over nilotinib since they are otherwise roughly as effective as each

by Damian Gabilondo (Apr 14)

Thanks David for your answer, the link you shared seems not to work, if you can send it again I would appreciate it.
I am in RMM PCR 0.022 9 months after the diagnosis with Tasigan 300 mg, my

by David Fitz (Apr 12)

Your English is fine!
All TKIs carry hepatoxicity risk, but ponatinib is the one with by far the highest risk. There are some interesting statistics here:
https://www.ncbi.nlm.nih.gov/pmc/

by Damian Gabilondo (Apr 10)

Hello, sorry for my English, I wanted to consult with the experts, in May it will be 1 year after starting my treatment with Nilotinib 300, my PCR February 2019 was 0.022, the liver values went up
Category: Uncategorised

Replies: 3

Last updated: 15 April 2019
Sando on 14 April 2019

Category: Uncategorised

Replies: 6

Last updated: 15 April 2019

Mum newly diagnosed
by Sando (Apr 15)

Thank you very much for your response and I hope you are doing well.

by Felix (Apr 14)

Hi Sando,sorry to hear about your Mum but try not to worry hopefully the worst bit is over the dreaded bone marrow test that is the worst bit for me. ,I know it's a huge shock when the word

by Sando (Apr 14)

Thank you for your reply, hoping and praying this is the case.

by David Fitz (Apr 14)

Routine tests are the best way to discover you have CML, because it usually means it’s caught well before it becomes symptomatic. In all likelihood, the imatinib will get it under control nice
Category: Uncategorised

Replies: 6

Last updated: 15 April 2019
Felix on 4 March 2019

Category: Uncategorised

Replies: 12

Last updated: 13 April 2019

Scuba 50 or 70 Dasatinib
by Felix (Apr 13)

Yes I am going to do just that ,print some off and show her on my next visit ,thank you .

by scuba (Apr 13)

Show your doctor the literature and research articles you have seen posted here on the new findings regarding dose.
Remind her biology of cancer is not the same as biology of bacteria or virus

by Felix (Apr 13)

Hi, my Doc was horrified when I told her I was only taking 50mg instead of 70 she subscribed ,her gob dropped haha,I can just imagine her face when I suggest 20 mg in the future,she will throw me

by Felix (Apr 13)

Hi Kat ,that is so good to hear,thank you very much ,Denise.
Category: Uncategorised

Replies: 12

Last updated: 13 April 2019
David83 on 30 January 2019

Category: Uncategorised

Replies: 9

Last updated: 13 April 2019

An Unconventional Nilotinib Reduction
by David83 (Apr 13)

Thanks for the info Kat and Buzz.
I think I’m pretty set on requesting a switch to sprycel and seeing how that works. It was discussed briefly but the decision was delayed so more research and

by Buzzm1 (Apr 12)

David, Sprycel 50mg, at most; if Sprycel is going to work for you it will work at 50mg. or less. Easier on the counts too.

by kat73 (Apr 11)

Well, that's another point in Sprycel's favor. I was doing OK on Gleevec (CML-wise) but I was definitely a turtle. When I switched to Sprycel, my PCR zoomed down quite a bit,

by David83 (Apr 11)

Thanks Kat, it’s difficult to know what the best way forward is but my concern is that I’m somewhat time limited work wise. I work in an industry that requires strict medical checks and
Category: Uncategorised

Replies: 9

Last updated: 13 April 2019
Ontasigna on 12 April 2019

Category: Treating CML

Replies: 2

Last updated: 12 April 2019

Nilotnib & Lemon
by Ontasigna (Apr 12)

Thanks David!! I mean not full glass of lemon juice (90% water and 10% lemon).
Some studies say - to avoid citrus fruits while on Nilotnib. Has any one tried lemon?

by David Fitz (Apr 12)

Yes, absolutely fine.
My question would be why you would want to in the first place!! 🤢 I don't think I could stomach a glass of lemon juice!
David.

by Ontasigna (Apr 12)

Hi all,
Is it ok to drink Lemon juice while on Nilotnib?
Kindly suggest.
Category: Treating CML

Replies: 2

Last updated: 12 April 2019
Dennis on 10 April 2019

Category: Uncategorised

Replies: 19

Last updated: 12 April 2019

25 years with CML
by ThomasS (Apr 12)

Dennis, Yes I had several side effects from 100mg of Sprycel. I had a much easier time with Gleevec, but it stopped working after 10 years. Terrible dreams all night long with 100mg Sprycel, no

by Dennis (Apr 12)

Ah sorry I’ve got my Tanya Cat mixed up with my Kat 73. 😀

by Tanya Cat (Apr 12)

Dennis I have not had stomach problems just mental issues and hormonal ones.Think I will stick on it too.Having said that,my blood tests are not improving but because I tolerate Glivec better than

by Dennis (Apr 11)

Tanya
yes I will stay on Imatinib. For many years it did cause me stomach problems, including diarrhoea. 12 months ago I went into A&E with severe stomach pains and was told I had a stomach
Category: Uncategorised

Replies: 19

Last updated: 12 April 2019
Tanya Cat on 17 March 2019

Category: Uncategorised

Replies: 18

Last updated: 10 April 2019

Do you know how you got CML?
by Tanya Cat (Apr 10)

Heaps of reading material here with excellent information!Thanks heaps for all of that!

by r06ue1 (Apr 10)

I wrote an article on this a while back. While I now believe that there is no direct link between Benzene and CML (other blood cancers most definitely) it does show you how toxic we have

by Andy (Apr 7)

Hi , i am not sure about the reasonbut i worked night shift for 2 years and with lot of work stress and irregular sleeping patterns could cause my illness . I have thought about this round and round

by Poppert (Apr 6)

I suspect something like stress or mental trauma for me too.
I had a personal crisis in 2013. It was devastating to me and it affected me both mentally and also indirect physically. I didn’t
Category: Uncategorised

Replies: 18

Last updated: 10 April 2019
Andy on 5 April 2019

Category: Side effects

Replies: 6

Last updated: 10 April 2019

Joint and muscle discomfort
by sorin real (Apr 10)

I'm on Tasigna. Being an inveterate consumer of curcumin and being curious to know if it is appropriate to take it with Tasigna, I wrote an email at Novartis headquarters in Switzerland.

by scuba (Apr 10)

Just to be clear.
Magnesium does not need to be taken with vitamin D. Magnesium is water soluble, vitamin D is not. Vitamn D is long lived in the blood (half life = 2 months). As long as vitamin D

by bendicco (Apr 10)

Just my thoughts, Magnesium should be taken with fit D. My oncology pharmacist has done research on Curcumin and warned me NOT to take its it may interfere with the med. I had been taking it for

by scuba (Apr 8)

Magnesium and Curcumin !!
Category: Side effects

Replies: 6

Last updated: 10 April 2019
Evoabbi1989 on 8 April 2019

Category: Food & fitness

Replies: 2

Last updated: 8 April 2019

Supplements
by cmljax (Apr 8)

Exercise, exercise, exercise. Whole foods diet with plenty of veggies for natural vitamins. Sunshine for Vitamin D

by scuba (Apr 8)

Do a search using the search box above (next to Account) for "supplements", "fatigue". You will see many posts on the subject. It has been covered extensively. If you have a

by Evoabbi1989 (Apr 8)

Hi All
I'm currently on 400mg of Imatinib (Gleevec) almost 5 months in. Wondering if anyone can advise on supplements for dry skin, fatigue and something to boost immune system?
Also what
Category: Food & fitness

Replies: 2

Last updated: 8 April 2019
Vijay Kumar Verma on 5 April 2019

Category: Treating CML

Replies: 5

Last updated: 7 April 2019

PCR@21 MONTHS
by Vijay Kumar Verma (Apr 7)

Side effect:- fatigue,swelling (moderate).sometime calf muscle stiffness with high decree of pain.6/4/2019 cbc report:-hg 11.20,rbc 3.30,pcv 32.50,mcv 98.50,mch 33.90,mchc 34.40,rdw 15.50,absolute

by Vijay Kumar Verma (Apr 6)

IRMA mutation test jan 2019,no mutation detected.

by Job Guerra (Apr 5)

Have you had mutation testing? Just wondering because our numbers are similar and I switched to Nilotinib from Dasatinib. Not a lot of research for 2nd gen TKI to another 2nd gen as most people

by Vijay Kumar Verma (Apr 5)

Next visit on 8th april.i was on nilotinib for 9 months, from june 2017 to feb 2018.3rd month pcr was 4.15%,6th month pcr was 1.77%,12th month pcr was 1.108%,18th pcr 1.016%, CML CP
Category: Treating CML

Replies: 5

Last updated: 7 April 2019
Sarah63 on 7 April 2019

Category: Treating CML

Replies: 0

Last updated: 7 April 2019

What ever happened to Fish Oil Trials?
by Sarah63 (Apr 7)

Anyone here familiar with the preclinical trials on fish oil and derivatives that cured leukemia in mice by killing the Leukemia Stem Cells?
Category: Treating CML

Replies: 0

Last updated: 7 April 2019
ThomasS on 20 March 2019

Category: Uncategorised

Replies: 14

Last updated: 7 April 2019

Retirement in the US
by Buzzm1 (Apr 7)

shweflen (U.S. LLS forum) purchased Imatinib Mesylate 90 X 100mg under the Cigna Medicarte Drug Plan for $395.42 which would likely indicate a roughly $500 price for 30 X 400mg. shweflen

by Tbrand (Apr 7)

I found on GoodRx several US pharmacy’s offering generic Imatinib 30 400mg pills for around 700.00. That looks positive.

by onekayaker (Apr 3)

Tbrand,
Marks Marine Pharmacy is Canadian based (brick & mortar) and ships to you in the US. My cancer mentor who lives here in Texas buys her gleevec there. You can buy the canadian

by Tbrand (Apr 3)

My research shows I can save min. 50% buying in Canada. I would rather use the savings for quarterly vacations in Canada. I do not qualify for subsidies and am not ok paying more. The system stinks
Category: Uncategorised

Replies: 14

Last updated: 7 April 2019