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alexmcpee on 5 July 2018

Category: About CML

Replies: 3

Last updated: 5 July 2018

Travel Insurance UK to France
by Felix (Jul 5)

Hi, I got an email from Savvy Woman yesterday she’s off the BBC I think ,she has an article about trying to get travel insurance when you have cancer on there ,just Google it.She mentions a few

by alexmcpee (Jul 5)

Thank you!
Yes I did use the search but couldn’t see a comprehensive list of insurers. I did find a link that Sandie posted but the URL was offline.
I’ve just used moneysupermarket for cancer

by AlastairC (Jul 5)

Alex there has been a lot correspondence over many years on this subject. If you put travel insurance in the search box at top right of the web page you will see what I mean. This link is the most

by alexmcpee (Jul 5)

Hi all,
Looking for some urgent advice I am going to France for 2 days tomorrow.
I have travel insurance with my bank (Lloyd’s) but I don’t think they’ll now cover me due to my diagnosis in March.
Category: About CML

Replies: 3

Last updated: 5 July 2018
MJP on 3 July 2018

Category: Side effects

Replies: 1

Last updated: 3 July 2018

Berocca for fatigue?
by David Fitz (Jul 3)

A colleague of mine swears by it as a hangover cure!
It's not going to cause any problems with your TKIs - so nothing to lose, but they're not a silver bullet to tiredness by any stretch.

by MJP (Jul 3)

Trying to find some information on the use of Berocca to help combat fatigue. My stepdaughter takes it for “energy”. http://www.berocca.co.uk/what-is-it/
I’m on 100mg sprycel
Category: Side effects

Replies: 1

Last updated: 3 July 2018
SusanL on 29 June 2018

Category: Uncategorised

Replies: 2

Last updated: 3 July 2018

Magnesium citrate with gleevec ?
by SusanL (Jul 3)

Thank you....

by scuba (Jun 30)

Yes.
Better to take Magnesium Taurate, but Citrate is fine.

by SusanL (Jun 29)

Is it ok to take magnesium citrate with gleevec? Do I need to take it so many hours apart?
Many thanks,
Susan
Category: Uncategorised

Replies: 2

Last updated: 3 July 2018
Bronson_CLE on 3 May 2018

Category: Side effects

Replies: 10

Last updated: 2 July 2018

Does reducing Gleevec dose help with facial/eye edema?
by Vijay Kumar Verma (Jul 2)

Use ice pack 3 to 4 times in a day ,to exercise to sweat a lot,do sauna.share the result after three four days

by tiredblood (May 10)

If they’d just acknowledge the side effects exist and they don’t have much to offer for the side effects would go along way with me.

by Bronson_CLE (May 9)

Thank you Kat for your response. I'll wait until my next appt. in Nov. and if my numbers are still good; try pushing a bit with my onc for dose reduction.

by kat73 (May 8)

Bronson - We can all relate to that feeling of wanting to go rogue every once in awhile! When you don't feel listened to and you're miserable, and it looks like nothing but more of the same
Category: Side effects

Replies: 10

Last updated: 2 July 2018
Adeola on 27 June 2018

Category: Treating CML

Replies: 7

Last updated: 2 July 2018

My body is retaining a lot of water
by Vijay Kumar Verma (Jul 2)

Do exercise and sweat a lot,drink plenty of fluids.posdible take sauna

by Justine (Jun 30)

At last visit four days ago my oncologist prescribed hydrochlorothiazide 25mg, a diuretic, because I have also had edema. It does seem to help. My eyelids are less swollen, in particular, which is

by chevyflame (Jun 30)

I also had full body edema from Gleevec 400mg. Had to discontinue the drug after just 44 days because I had gained ten pounds in three days - all fluid. My opthamologist said even my eyeballs were

by LouiseS (Jun 28)

To follow on from Kat, my husband has had terrible eye swelling on Sprycel . Reducing his medication from 100 to 50 mg has made a huge difference , but it still hasn’t gone away. It’s worst in the
Category: Treating CML

Replies: 7

Last updated: 2 July 2018
SusanL on 24 June 2018

Category: Uncategorised

Replies: 2

Last updated: 29 June 2018

Steriods...Need Help with Dosing!
by SusanL (Jun 29)

Thank you for the response. Along with all the other testing my doctor found out that I have autoimmune antibodies to my adrenals. He wants to give steroids before it turns into adrenal

by David Fitz (Jun 27)

Hi Susan,
I’m sorry I don’t have an answer for you but the drugs.com stuf is often missing nuances that your doctor (hopefully) has considered.
It does sound like a good idea to take those as

by SusanL (Jun 24)

Hi. I am new to “ALL” this and I am having a very hard time dosing my steroid that I need to use for my Addison’s disease with my gleevec. I was on dexamethasone and switched from that
Category: Uncategorised

Replies: 2

Last updated: 29 June 2018
hannah2010 on 26 June 2018

Category: Uncategorised

Replies: 4

Last updated: 22 November 2021

Cml and pregnancy
by Fillette (Jun 29)

Dear Hannah,
I would like to wish you a good luck. I am 27 years old and I was diagnosed 3 months ago. I as well wish to have a family sometime in the future. Please keep us updated.
Best,

by Gitel (Jun 27)

Hi, When pregnant, especially in the first trimester, it is safest to not take anything, any drug, as the developing baby could be affected. Be especially careful. Check with your physician.

by hannah2010 (Jun 27)

Hi david
thanks that has really helped! I think when it is turned into real numbers it's easier to understand we can all grasp the concept of 89 in a million! but when they are in percentages I can'

by David Fitz (Jun 26)

Hi Hannah,
Congratualtions! Fertility and CML is complicated, as you know. For us guys it’s a whole lot easier and even then not always simple.
It’s worrying when someone newly diagnosed finds out
Category: Uncategorised

Replies: 4

Last updated: 22 November 2021
ipmaki on 9 May 2018

Category: Side effects

Replies: 30

Last updated: 28 June 2018

Pressure in Chest when Standing
by Liamsdad (Jun 28)

I am currently on 40mg of Sprycel and the only side effect at this dose has been dizziness until last week when I started to feel shortness of breath. A day later I continued with the short breath

by LouiseS (May 31)

My husband hasn’t experienced swollen lymph nodes in the chest but he did in his neck. It came and then went away after a few days. Then the swelling focused around his eyes and that was much

by hannibellemo (May 31)

Glad to read that you don't have any issues based on CT finding. On the other hand, I can understand the disheartening feeling...it's always nice to be able to put a name to something that is

by ipmaki (May 30)

I just wanted to follow-up on my CT scan for those interested. Turns out I don't have a pleural effusion. The results say "No CT evidence of acute cardiopulmonary process. No suspicious pulmonary
Category: Side effects

Replies: 30

Last updated: 28 June 2018
Gitel on 25 June 2018

Category: Uncategorised

Replies: 4

Last updated: 27 June 2018

Very Slow Response,withBCR ABL. Only 25% after 7 months. Very worried.
by Gitel (Jun 27)

You are right Romo. I have to keep telling myself to give it time. I have read enough to know how atypical my response is to the TKI. However, the clinical knowledge and experience of the physicians

by Gitel (Jun 27)

Thanks Louise. Mayo Clinic in Rochester Minnesota has top expertise, they are a major research, teaching, medical center. Also a major Cancer center in the USA. Your cautions and suggestions

by Romo (Jun 27)

Don’t fret. You have the rest of your life to beat this.
You have beat many things before.
Your in good hands.
Give this some more time.
Romo

by LouiseS (Jun 26)

Gitel I am not one of the experts on here but I just wanted to say, I am sure you are in good hands and best of luck for Thursday. Does the Mayo have a CML specialist ? I would be tempted to ask for
Category: Uncategorised

Replies: 4

Last updated: 27 June 2018
magic1111 on 23 June 2018

Category: Getting help

Replies: 1

Last updated: 26 June 2018

Blast suspect on CBC
by David Fitz (Jun 26)

Hi Magic,
Have you been given a diagnosis from a doctor? Blood counts can be inaccurate by a machine - for example when I was first diagnosed the machine counted over 30% blasts, which was

by magic1111 (Jun 23)

Hello!
In the past 2 years I've been feeling dizzy and tired easily. Moreover, I keep getting flu, sorethroat every month or 2 months and fever.
Last week I also had gastric problem and severe
Category: Getting help

Replies: 1

Last updated: 26 June 2018
shebako on 22 June 2018

Category: Uncategorised

Replies: 7

Last updated: 25 June 2018

Discomfort on my left side rib cage mostly slightly at my back
by Justine (Jun 25)

Yes, exactly. Gentle stretching can also help. My oncologist recommended yoga for a number of reasons and it is very relaxing. Good luck & take care!

by shebako (Jun 25)

Does the discomfort come to you occassionaly and stops after some days?

by shebako (Jun 25)

Hi Sandy,
Thanks for the feedback.
For my blood result are spot on. For example:
Hemoglobin level - 13.7
White blood cells - 3.8
Platelets - 210
In addition, my Oncologist mentioned to me that the

by Justine (Jun 24)

I defer to Sandy on this for expert advice, but would say that when I do have discomfort, I just try to drink more water, rest, walk at a gentle pace, and as a last resort take ibuprofen for pain.
Category: Uncategorised

Replies: 7

Last updated: 25 June 2018
kutsushita on 24 June 2018

Category: Blood tests

Replies: 5

Last updated: 25 June 2018

I cannot achieve MR4.0
by kutsushita (Jun 25)

Thank you for your history, Isla. Now I feel safer that others have pleteaus for long time like me.
Also thank you for the infomation of dose reduction. I think I am on the right truck, and would

by Isla D (Jun 24)

Here is my history in case it's helpful. I started on 100mg Sprycel and went to 50mg after the first six months.
Kat, I LOVE the fact that your BCR ABL level has decreased on 20mg. Very

by kat73 (Jun 24)

Yes, I stayed where you are for about two years and then started getting "<0.01" for a year and now 0.005 and 0.006. The latter two on 20 mg Sprycel.

by David Fitz (Jun 24)

Totally agree with this. 0.014% is a deep response and a very good place to be. There is absolutely no reason to do anything other than keep going on as before. We should not get obsessed with lower
Category: Blood tests

Replies: 5

Last updated: 25 June 2018
scuba on 19 June 2018

Category: Treating CML

Replies: 14

Last updated: 25 June 2018

New dug Miristen targets Leukemic stem cells
by Romo (Jun 25)

This guy talks about the very thing you mention.
Short video.
https://www.youtube.com/watch?v=RvJ_xe5LEyY
Excessive tumor necrosis factor signaling.
Romo

by RC Kirk (Jun 24)

If miristen pans out as an effective agent then we'll be able to live less anxiously. I think that's what he's trying to say.
I believe I read that when the LSCs are active they are reduced by

by cmljax (Jun 24)

But the LSC's are not eradicated by any of the TKI's, at least that's what I understood, which is why their isn't a cure for CML. Perhaps Scuba or Sandy can chime in here. What is the

by RC Kirk (Jun 23)

I think maybe what Guido is trying to get across is that CML is likely to return if the leukemic stem cells aren't fully eradicated by a TKI alone. If miristen pans out as an effective agent
Category: Treating CML

Replies: 14

Last updated: 25 June 2018
chris mason on 20 June 2018

Category: About CML

Replies: 5

Last updated: 24 June 2018

Hair dye & imatinib
by Isla D (Jun 24)

I've let my hair go au naturale (rocking the grey!) since my CML diagnosis. I'm sure dying my hair didn't cause my CML but there is a question mark over whether dark hair dye is implicated in some

by Romo (Jun 22)

Don't use hair dye if it's makes you scary.
Otherwise use it.
romo

by Tbrand (Jun 21)

I use hair color for men with no issues.

by Libby (Jun 21)

I've been having my hair dyed for years. There is no way I will go grey!! Since diagnosis and starting dasatinib my hair texture has changed and it isn't so thick as it used to be - as I
Category: About CML

Replies: 5

Last updated: 24 June 2018
sandy craine on 24 June 2018

Category: Uncategorised

Replies: 0

Last updated: 24 June 2018

New Prize for Brian Druker MD
by sandy craine (Jun 24)

OHSU Knight Cancer Institute Director Brian J. Druker, M.D., has been awarded the 2018 Tang Prize in Biopharmaceutical Science for his pioneering role in shaping the fields of precision medicine and
Category: Uncategorised

Replies: 0

Last updated: 24 June 2018
Vikita Parmar on 18 June 2018

Category: Uncategorised

Replies: 9

Last updated: 22 June 2018

Newly diagonised
by alliswell (Jun 22)

Dont worry about uric acid levels.
Zyloric will handle it easily.in a few months it will go back to normal values.
And i guess it is not unusual to have elevated level of uric acid levels at the

by alliswell (Jun 22)

Dont worry about uric acid levels.
Zyloric will handle it easily.in a few months it will go back to normal values.
And i guess it is not unusual to have elevated level of uric acid levels at the

by Vikita Parmar (Jun 22)

Thanks fr d reply
his next bcr-abl test falls on 21st July
he started imatinib on 9th June n his new blood test done yesterday showed a wbc count of 20000 from 162571 before starting the

by scuba (Jun 20)

Yes, follow Alastair's advice.
Category: Uncategorised

Replies: 9

Last updated: 22 June 2018
slindon2 on 28 April 2018

Category: Treating CML

Replies: 17

Last updated: 21 June 2018

CML relapse
by Tbrand (Jun 21)

Have you been on 600 the whole time?

by kat73 (Jun 21)

Sorry - PS here - I guess I meant you got close to CCyR, which is a truly significant goal. To confuse you more - sorry - have you had a FISH test done? If that is negative, it's a real

by kat73 (Jun 21)

Paul - I'm really sorry for all the consternation the confusion is causing you. I would feel exactly like you in your situation. My guess is that they ARE re-testing your CML status with

by Kathyp (Jun 21)

Hi Paul, I’ve been on glivec since 2003 , and the 1st couple of years I had the same response as you, I went from 400 to 600 and I’ve been in major molecular response ever since . Maybe speak to
Category: Treating CML

Replies: 17

Last updated: 21 June 2018
Kathyp on 21 June 2018

Category: Uncategorised

Replies: 3

Last updated: 21 June 2018

Is it safe to take vitamins on glivec
by Gitel (Jun 21)

A note of caution. I was diagnosed in Dec 2017 with a CBC showing 303,000 white cells. Put on Imatinib which I am resistant to. Switched to Sprycel which seems to be working but will not know

by Kathyp (Jun 21)

Thank you ☺️

by AlastairC (Jun 21)

Kathy, I'm no expert on this but a few months ago there was a lot of discussion on this forum about curcumin which is a compound contained in turmeric. If you put curcumin in the search box above

by Kathyp (Jun 21)

Hi all, looking into taking tumeric for arthritis , and maybe other vitamins as I’m on a health kick,sorry if it’s a silly question but are all vitamins safe x
Category: Uncategorised

Replies: 3

Last updated: 21 June 2018
Vics on 20 June 2018

Category: Children & young people

Replies: 2

Last updated: 21 June 2018

Blood test.
by Gitel (Jun 21)

Have you had an Internist examine you, with the knowledge or referral of your oncologist. Perhaps someone with a broader focus than CML could give a broader perspective. My haematologist oncologist

by cmljax (Jun 21)

The posted blood counts are all in the normal range, so that's good. Give us some history please - when diagnosed, TKI and dose, recent PCR results. I have dizzy spells occasionally and I'm on

by Vics (Jun 20)

Hi guys i have been increasingly poorly through the last few months feeling tired faint and dizzy i have had blood tests that have come back normal. I have no idea what i am looking at but i am
Category: Children & young people

Replies: 2

Last updated: 21 June 2018
tiredblood on 6 May 2018

Category: Uncategorised

Replies: 8

Last updated: 21 June 2018

My first blip after 4 years
by LouiseS (Jun 21)

Best of luck with the Sprycel tired blood. Great that doctor agreed to start you on 20 mg. Hopefully no side effects!

by tiredblood (Jun 20)

4/30/18 0.050%
5/30/18 0.000%
6/11/18 0.117% (specimen taken same day as doctor visit and agreement to try dasatinib 20mg/day)
6/19/18– still waiting for specialty pharmacy to ship dasatinib!

by tiredblood (May 7)

Thanks Louise and Scuba for the helpful info.

by LouiseS (May 7)

Sorry to hear about the blip. I was searching for another article supporting starting sprycel at 50 for libby when I came across this one which I can't work out to copy and paste from my phone but
Category: Uncategorised

Replies: 8

Last updated: 21 June 2018