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Ontasigna on 17 February 2019

Category: Treating CML

Replies: 4

Last updated: 19 February 2019

CBC report - Increased indirect bilirubin,Basophils and Eosnophils
by Evelinka89 (Feb 19)

I do not know which bilirubin units are used in your country. I suppose something else than micromoles per liter, because in these units 4,8 is pretty low 😊. I checked various units and if it is mg/

by Ontasigna (Feb 18)

Looking for some suggestions urgently. Pls help.
My indirect bilirubin jas spiked up to 4.8. Is it harmful?

by Ontasigna (Feb 17)

Yes, Neutrophils - 45% and lymphcytes - 43%.
My indirect bilirubin has climed up till 4.8 now.

by AlastairC (Feb 17)

Do your test results show a number for neutrophils?
Category: Treating CML

Replies: 4

Last updated: 19 February 2019
Zed Mlikojed on 28 January 2019

Category: Getting help

Replies: 10

Last updated: 18 February 2019

Moving abroad with CML diagnosis
by onekayaker (Feb 18)

The two TKIs I took, both makers of the drugs have a out of pocket assistance program. Both were $25,000 per year. Through MD Anderson my out of pocket would have been eaten up quickly

by Zed Mlikojed (Feb 8)

Hi Louise,
thank you very much for your message - this is very helpful information esp. about "in network". I will make sure that the specialist I need operates in the network of the

by LouiseS (Feb 2)

Hi Zed , my husband and I also are from Europe living in the US, in California.
My husband was diagnosed a year ago last Sept. He has a PPO plan through his employer which involves him paying a

by RC Kirk (Jan 29)

If this helps, here is the amount my pharmacy is currently charging for a 30 day supply of 300mg generic imatinib - $5,654.48
Category: Getting help

Replies: 10

Last updated: 18 February 2019
Sandra Djureholt on 7 January 2019

Category: Side effects

Replies: 9

Last updated: 17 February 2019

Splenomegaly
by RC Kirk (Feb 17)

And raising babies at the same time!

by Sandra Djureholt (Feb 17)

That's ok :) It's quite a lot of work running a site!

by David Fitz (Feb 16)

Hi Kirk,
Yes that's broken at the moment. We are working to fix / replace.
David

by RC Kirk (Feb 16)

I don't get notifications either. Maybe that feature isn't working?
Good to hear that your spleen isn't bothering you any longer.
Category: Side effects

Replies: 9

Last updated: 17 February 2019
Tanya Cuffe on 6 February 2019

Category: Uncategorised

Replies: 28

Last updated: 16 February 2019

Am so nervous,changing to Sprycel from Gleevec...
by Tanya Cuffe (Feb 16)

Magnesium citrate is good form to take.Had enough of feeling unwell quite frankly...hot cold anxious depressed hair loss aches all over early menopause etc.The good things are that there is hope for

by Felix (Feb 16)

Hi, saw my doc,had lots of blood tests including HIV and all the Hepatitis ones goodness knows why and an ECG to see how I am doing before starting on new meds .She wants to start me on 100 mg and I

by Tanya Cuffe (Feb 16)

Hey Denise,started on Sprycel 50 mg.Have taken 4.Dont see doctor til end March so hopefully results will be good!Have been feeling bit weird in them,itchy scalp emotional and bit depressed but

by Felix (Feb 16)

Hiya Tanya ,Just checking up on you to see how you are feeling on your new meds ,hope you are feeling ok.Havent started on mine yet ,Denise.
Category: Uncategorised

Replies: 28

Last updated: 16 February 2019
fiona vaughan on 3 January 2019

Category: Uncategorised

Replies: 4

Last updated: 16 February 2019

CML meeting at Hammersmith Hospital 16 February
by fiona vaughan (Feb 16)

The next date at Hammersmith for a meet up of patients and caregivers with CML is 18 May and 7 sept. Today I finally got to meet other people with CML ....what a relief to know I’m not

by David Fitz (Feb 9)

We don't have a date yet for the 2019 patient day. It's usually every year, and details will be posted on this site as soon as they are available. As you can imagine, it takes quite a lot of

by fiona vaughan (Feb 9)

I’m not sure when the meetings are but I know Hammersmith have them 3 x per year. I have come over from The Middle East especially to go to the one next weekend. I also came over to get a

by M.ashcroft (Jan 14)

Hi Fiona

Do you know if there will be another meet up later in 2019 as I would be traveling from Warrington and I can't make it for the 16.2.19 meeting although I would like to attend one of
Category: Uncategorised

Replies: 4

Last updated: 16 February 2019
bendicco on 16 February 2019

Category: Drug-food interactions

Replies: 3

Last updated: 16 February 2019

MUSHROOMS AND CML
by bendicco (Feb 16)

See what I mean? And yes according to them ginger was a really big no-no!

by AlastairC (Feb 16)

New one on me. I was on Glivec and then generic imatinib for over 11 years. Must have consumed kilos of garlic (&ginger if they include that) and 10s of kilos of mushrooms over that period.

by Tbrand (Feb 16)

That’s not good, it would include girls. I’m on Imatinib and associate with all the G’s and have never had issues.

by bendicco (Feb 16)

Conflicting information , I was told by the oncology pharmacist at Sloan to stay away from mushrooms! I was DX with CML almost 3 years ago and take Gleevec. I was also told to stay away from
Category: Drug-food interactions

Replies: 3

Last updated: 16 February 2019
gillianb on 15 February 2019

Category: Uncategorised

Replies: 2

Last updated: 16 February 2019

Young Adults with CML
by gillianb (Feb 16)

Thank you David! Yeah I'm just going to forge ahead and try to take extra good care of my body and mind. I sure appreciate the online community we have here, it has been helpful.

by David Fitz (Feb 15)

Hi Gillian,
Two months is no time at all. When you start taking the medication for CML, it starts to break down all sorts of things in your body - some doctors give medication like allopurinol to

by gillianb (Feb 15)

Hello,
I am 22 years old and was diagnosed 2 months ago. I started on Dasatanib 100mg daily. They will test my BCR-ABL again in April, as well as another bone marrow biopsy to see how things are
Category: Uncategorised

Replies: 2

Last updated: 16 February 2019
Tanya Cuffe on 13 February 2019

Category: Uncategorised

Replies: 10

Last updated: 16 February 2019

Antidepressants with CML meds?
by Tanya Cuffe (Feb 16)

New area,new doctor need be found...taking biotin for hair loss as believe it’s ok...Thank you,friend,for saying things will get better!Theres always hope😊

by kat73 (Feb 15)

Your primary care doctor can order the tests, and I don't see any reason why not to - you want to be in the best nutritionally healthy condition you can be in order to help the Sprycel help you

by Tanya Cuffe (Feb 15)

dont know where you get vitamin levels tested? Maca was for menopausal symptoms,panadeine forte was an excuse to take something...will stop now plus the rest.feel clarity regarding what I should do

by kat73 (Feb 15)

I second everything Dawn so helpfully added. Have you had your vitamin D, B, and Magnesium levels tested and found you were deficient? If not, they are a waste of money and stomach acid
Category: Uncategorised

Replies: 10

Last updated: 16 February 2019
bendicco on 15 February 2019

Category: Uncategorised

Replies: 0

Last updated: 15 February 2019

Fatigue on Gleevec
by bendicco (Feb 15)

Anyone take beet powder to help with fatigue?
Category: Uncategorised

Replies: 0

Last updated: 15 February 2019
MJP on 9 February 2019

Category: Blood tests

Replies: 6

Last updated: 15 February 2019

0.029% at 9 months
by LabNoir (Feb 15)

Thanks, I did read a bunch of paper about increasing PCR and Some paper suggest a variance of 0.5 log, others 2 fold increase. But I guess none of these apply at around MR4 as it reach the detection

by RC Kirk (Feb 12)

Good morning Mark,
As you haven't had any side effects, I can understand why your doc doesn't want you at a lower dose. The research I've read indicates that drug breaks due to

by AlastairC (Feb 12)

The difference between 0.026% and 0.017% is well within the accuracy limits of the test process - to all intents and purposes they are the same. You are clearly a hare (getting to MMR in 6 months),

by LabNoir (Feb 12)

I also just got my 9 month PCR and it is similar to yours at 0.026% but I ain’t happy about it at all since my 6 month number is 0.017%! It is funny how these simple sequences of numbers can
Category: Blood tests

Replies: 6

Last updated: 15 February 2019
Diane CW on 30 January 2019

Category: Uncategorised

Replies: 24

Last updated: 14 February 2019

New Here, Looking for help
by Diane CW (Feb 14)

Hi Scuba
yes sorry should have made that clear, definitely K2 that I am taking.

by scuba (Feb 14)

Just verifying it is vitamin K2 you are taking - .. correct?
K2 is also known as menanquinone or MK-7. Make sure it is K2. (vitamin K can refer to K1 which works differently)

by Diane CW (Feb 14)

Thanks Scuba. I am starting with the daily D3 and K today as you recommended and will ask for my levels to be checked in six weeks. Just hoping and keeping my fingers crossed for a positive outcome

by scuba (Feb 13)

I'm impressed - your doctor prescribed vitamin D3 instead of D2. That's good.
50,000 one day a week - not so good. When I was prescribed 50,000 once per week, I just started at 10,000 IU
Category: Uncategorised

Replies: 24

Last updated: 14 February 2019
POPPY on 19 October 2018

Category: Treating CML

Replies: 10

Last updated: 14 February 2019

To proceed with Allo SCT or no?
by Job Guerra (Feb 14)

I would not be overly concerned about 12% at this point. I was at 23% after 3 months (which is not good), 1.8% at 6 months, and still going down. Not everybody responds the same. I

by POPPY (Feb 14)

Hi All! His first PCR test showed 12% (he was on 400mg twice daily). We were told that 10%-20% is the warning zone and anything that falls below 10% is in the safe zone. Now his dose has

by RC Kirk (Nov 28)

Thanks for the update with the good news!

by POPPY (Nov 28)

Hi Kirk,
After 2 months (diagnosed on Sept) , his bloodwork is now normal. His basophils reduced from 22% to 2% then increased to 4% and then decreased to 0.7%. Finally, good news after several
Category: Treating CML

Replies: 10

Last updated: 14 February 2019
Maxmillan Maxmillan on 11 February 2019

Category: Treating CML

Replies: 5

Last updated: 13 February 2019

Swollen leg, pain, weakness and nausea.
by kat73 (Feb 13)

Has he even Googled hydroxyurea? He needs to see a doctor. Period. Glad his Gleevec dosage has been put right, but the hydroxyurea is just nuts. Also, a guy who falls, faints

by Maxmillan Maxmillan (Feb 13)

My friend has started one day with his normal dosage of 400mg of Gleevic (reduced from 800mg) the lightening pain in his legs has significantly subsided. He did take 500mg of hydroxyurea

by Evelinka89 (Feb 12)

I cannot see any connection between oedema and possible rise of WBC. Yes, there is a little physiological rise after trauma but not so high to cause this. It has to be really high to develop

by AlastairC (Feb 12)

I am also not a medical professional but feel that this does not stack up. I can't see the trauma of the fall leading to a WBC that made hydroxurea a good idea, and I'm not at all sure what
Category: Treating CML

Replies: 5

Last updated: 13 February 2019
MartinZA on 21 December 2018

Category: Treating CML

Replies: 3

Last updated: 12 February 2019

Fasting and imatinib
by Ray Sell (Feb 12)

Martin I'm wondering how your fast went after Christmas. I to am on Imatinib and would like to do the fast. Thank You Ray

by MartinZA (Dec 24)

Hi David
Thank you so much, as always, for your quick and helpful reply. I'm going to give it a try over this festive season and start fasting after Christmas. Will let everyone know

by David Fitz (Dec 21)

Hi Martin.
The advice to take imatinib with food is down to the fact that a fair amount of people feel nauseous if it's taken on an empty stomach. I know I certainly did feel a bit squiffy

by MartinZA (Dec 21)

Hi everyone
I have read with a great deal of interest the exceptionally interesting posts by scuba regarding fasting on dasatinib and the possibility of hitting the quiescent CML cells hard.
Category: Treating CML

Replies: 3

Last updated: 12 February 2019
MartinZA on 11 February 2019

Category: Treating CML

Replies: 6

Last updated: 12 February 2019

Bobbing about in MMR
by fiona vaughan (Feb 12)

I’m still waiting to feel grateful but I am not there yet. I was only diagnosed 3 months ago and at the time it didn’t really sink in and I just took the meds as I was told and carried

by kat73 (Feb 11)

Came in late here and never saw the deleted post. Am guessing, but I suspect there was some understandable venting of despair and anger. Whenever you hear the word "leukemia"

by MartinZA (Feb 11)

That is such a great response. Thank you so much for making me feel better and bringing some support to this support forum! Don't we all have bad days?!

by Damian Gabilondo (Feb 11)

Dear, I see that he is a man of numbers, me too, but I realized that not everything is a matter of numbers, statistics, percentages, answers, surveys and studies. The cure is in ourselves and how we
Category: Treating CML

Replies: 6

Last updated: 12 February 2019
Ros77q on 11 February 2019

Category: Uncategorised

Replies: 3

Last updated: 11 February 2019

Applying for australia
by johnw1001 (Feb 11)

I am sorry but am not able to advise you.
Some years ago I was involved with student recruitment into UK and at that time it was relatively straightforward for a dependent of a student who was

by Ros77q (Feb 11)

Thanks for the reply. My wife is studying there and want to be with her. Its student dependent visa. Will i be able to be with my wife and support her?

by johnw1001 (Feb 11)

Hi there,
I will not offer you any technical or other advice as I am not aware of which country you currently reside, but assuming that you are going in on a tourist visa there is no reason why your

by Ros77q (Feb 11)

Hi all my wife is in australia. I am overseas and want to be with her. I have cml and and taking dasatinib. My medication is entirely free. I do not pay anything. Will i get visa or will be refuse
Category: Uncategorised

Replies: 3

Last updated: 11 February 2019
Phuong Phuong on 6 February 2019

Category: Side effects

Replies: 10

Last updated: 9 February 2019

Indigestible, diarrhea - imatinib side effects
by Phuong Phuong (Feb 9)

Hi TJD
your story gives us inspiration and hope. Thank you so much!

by TJD (Feb 8)

Hi ,I actually did the clinical trial for Imatinib in 2001 and also.suffered with diarrhea,along with muscle cramps it was one of the main side effects.I.agree with others about Imodium ,luckily I

by Phuong Phuong (Feb 7)

Hi Ray, my boyfriend is on 400.
So good to hear you are doing fine now. We will try some of your and other member's advices. I hope they will work for my boyfriend.
Ray and all, I

by Phuong Phuong (Feb 7)

Hi Kat, Thank you so much for sharing your thought and experience.
Category: Side effects

Replies: 10

Last updated: 9 February 2019
Sonia0609 on 7 February 2019

Category: Children & young people

Replies: 8

Last updated: 8 February 2019

Plateaued with Imatinib
by Sonia0609 (Feb 8)

Thank you for your reply. All the responses have calmed my nerves. It's scary, especially the unknown. I will mention to my oncologist, however, if Nilotunib is the best option. Thank you for taking

by kat73 (Feb 8)

Sonia, this has happened to a lot of us. There are 5 TKI's, so the likelihood that one or more will work brilliantly for you is high. Tasigna is a reasonable next try, but be mindful

by Sonia0609 (Feb 8)

Hi John,
Thank you so much for your reply. I'm forever grateful for this forum!

That being said, the oncologist was hoping for quicker results. She felt that I should have been at a 3.5

by Sonia0609 (Feb 8)

Thank you so much for your reply. It's always nice to hear from someone who has gone through the same experience. I'm hoping my mutation results come back negative; however, what if it doesn't?
Category: Children & young people

Replies: 8

Last updated: 8 February 2019
Felix on 6 February 2019

Category: About CML

Replies: 5

Last updated: 7 February 2019

TRAVEL INSURANCE IN UK
by Toni (Feb 7)

Hi,
i used a company called All Clear and I thought they were excellent. I also managed to get reasonable quotes from age uk (I’m not old by any means) and stay sure. They all cover medical

by Felix (Feb 7)

Thank you very much ,will have a look at them,Denise.

by johnw1001 (Feb 6)

Suggest you try World First as they will cover all conditions.You will have to undergo medical screening, by phone usually, and one of the questions might be if you are undergoing chemotherapy

by Felix (Feb 6)

Hi Dusty ,thank you so much for taking the time to reply to me ,I will have a look at them .Cheers ,Keep well ,Denise.
Category: About CML

Replies: 5

Last updated: 7 February 2019
Ontasigna on 7 February 2019

Category: Treating CML

Replies: 6

Last updated: 7 February 2019

Help!! Unable to sleep due to anxiety
by Felix (Feb 7)

Hi,cut out caffeine and chocolate ,they keep me awake at night .Worth a try .

by Ontasigna (Feb 7)

Thanks so much Jax and Lukas. I am feeling positive now. Appreciate your support.
Jax- Is Ativan safe to take along with tasigna? Or Should be taken after couple of hrs?

by kali (Feb 7)

Great suggestions!
You can also tighten and relax each muscle group from head to toe. When finished focus on deep breathing and visualize the medicine attacking the cancer and as you breathe in

by scuba (Feb 7)

CML causing your anxiety?
I found that by taking 250 mg magnesium (as magnesium citrate or magnesium taurate) at bed time, it relaxed me and I sleep much better - back to normal. It also took care
Category: Treating CML

Replies: 6

Last updated: 7 February 2019