TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

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Vijay Kumar Verma on 2 July 2018

Category: Uncategorised

Replies: 10

Last updated: 6 July 2018

Pcr @12 months
by Vijay Kumar Verma (Jul 6)

Thanks sir,i'm cool now.all worries relieved.

by AlastairC (Jul 3)

In UK the likely timescale would be to have the next PCR test would be in September - 3 months after your last one. That would be long enough to see a further drop in BCR-ABL or to identify a

by Vijay Kumar Verma (Jul 3)

Thanks sir,my next due is in dec 18

by AlastairC (Jul 2)

Hi Vijay,
Most important thing here is that despite the change in medication the trend in BCR-ABL measured by PCR is still downwards. The reduction in the last three months shows that Imatinib is
Category: Uncategorised

Replies: 10

Last updated: 6 July 2018
David Fitz on 4 July 2018

Category: Clinical trials

Replies: 7

Last updated: 5 July 2018

Final results of DESTINY trial
by Romo (Jul 5)

Kat,
My interest in this study coupled with the Destiny Trial
is in the Destiny Trial dose reduction possibly attributed
to LSC becoming more active and therefore subject to TKI affect.

by cmljax (Jul 5)

Very encouraging. Hard to believe that standard dose of nilotinib is still considered 400 MG 2X/day in this study. I started nilotinib as my first line therapy 21 months ago at 300mg 2x/day

by kat73 (Jul 5)

Romo - Very interesting - thanks for posting this. I'm only sorry that their cohorts did not include patients on 20 mg Sprycel, because now there will still be controversy over that low a dose

by davewell (Jul 5)

This is very good news, that 72% for MMR4 is a crazily high number, compared to the previous results.
The part about the utility of de-escalation is also very intriguing. Seems like bit by bit we
Category: Clinical trials

Replies: 7

Last updated: 5 July 2018
SusanL on 3 July 2018

Category: Uncategorised

Replies: 2

Last updated: 5 July 2018

Feeling very warm after dosing my Gleevec/Imatinib every evening....
by SusanL (Jul 5)

Thank you! I found another group of people who take gleevec and three out of many became warm..from the inside. Their warmth actually immanated from the biopsy locales....I did tell my

by Justine (Jul 4)

That is very interesting. I haven't noticed anything like that but there does seem to be quite a range of different reactions among us. It would be worth mentioning to your doctor. I have tried

by SusanL (Jul 3)

So new and so many questions....
Does anyone become quite “warm” after taking their gleevec/imatinib dose? I take it after a good sized dinner. I also have several other symptoms...but
Category: Uncategorised

Replies: 2

Last updated: 5 July 2018
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
chevyflame on 30 June 2018

Category: Treating CML

Replies: 6

Last updated: 4 July 2018

Pleural Effusion
by LouiseS (Jul 4)

Hi there I spoke by a phone to a CML patient near us who had had Complications and had been to see Dr Shah in SF. She said he spent nearly 2 hours with her and she said the reassurance afterwards

by chevyflame (Jul 4)

Hello Louise,
I've been researching information on recurrent pleural effusions since my first thoracentesis. Not much information is available but I did find this article from February 2017.
Science

by LouiseS (Jul 4)

Hi Chevy
have you considered emailing one of the CML specialistws about your issues ? Or asking your doctor to email on your behalf? I know for example that Dr Shah in San Francisco was

by David Fitz (Jul 2)

Hi again. A pulmonologist would be a respiratory specialist alright.
Sorry I can't be of any help. It must be very frustrating since the reasons sprycel causes pleural effusion isn't well udnerstood
Category: Treating CML

Replies: 6

Last updated: 4 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
Justine on 30 June 2018

Category: Blood tests

Replies: 10

Last updated: 1 July 2018

15 mo results still no MMR
by Isla D (Jul 1)

Thanks for those articles and input :)
The idea of lower dose Dasatinib being more effective than higher dose is certainly tantalising. I'm just balancing that idea with seeing two patients on the

by MJP (Jul 1)

I'm getting a second opinion on treatment as my current onc seemingly refuses to discuss this issue. When I mentioned these studies - and that its MD Anderson leading them - he just

by scuba (Jul 1)

Thanks MJP - that's the one.
By the way - Dr. Cortes at M.D. Anderson verified he has seen this as well. They need more study to 'prove' out this theory - but I don't need a clinical study to inform

by MJP (Jul 1)

https://learningcenter.ehaweb.org/eha/2018/stockholm/216328/jangik.lee.t...

i believe this is the article on lower doses being more effective.
Category: Blood tests

Replies: 10

Last updated: 1 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: 29 June 2018

Cml and pregnancy
by Iyadede (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: 29 June 2018
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