Cortes Highlights Second-Generation TKIs for Frontline Therapy in CML

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King's College London - Patient Group (July 24th)

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David Fitz on 24 July 2019

Category: About CML

Replies: 3

Last updated: 24 July 2019

PinnedUK CML Patient Day 2019 - Leeds, 21st September
by David Fitz (Jul 24)

I would hope that issue was specific to the location last year and that the audio is easier to follow at the Leeds venue this year.

David.

by Nimbus2 (Jul 24)

Last year's meeting was excellent, but I really struggled in hearing some of the presenters over the sound system. Those who spoke more quietly or at a distance from the microphone were

by alexmcpee (Jul 24)

Looks great I may attend this. I am headed up to Kings College Hospital today for the talk at 2 - 4:30. I’ll be using more as an opportunity to meet fellow CML’ers. But of course listen

by David Fitz (Jul 24)

For those patients in the UK, the annual CML Patient day will be in Leeds this year on September 21st. It's a great day to learn more about CML, and get the opportunity to be able to ask the
Category: About CML

Replies: 3

Last updated: 24 July 2019
DKurup on 23 August 2019

Category: Treating CML

Replies: 1

Last updated: 23 August 2019

Stopped Imatinib under Self Prescription.
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: 1

Last updated: 23 August 2019
RSTEVENSON824 on 20 August 2019

Category: Drug-food interactions

Replies: 6

Last updated: 23 August 2019

Fish Oil and CML **
by kat73 (Aug 23)

Thanks, got it.

by David Fitz (Aug 23)

Hi Kat -
At present, search functionality is limited to key words - so you can just enter "fish oil" into the search box. There's no way to look at an individuals post history at

by kat73 (Aug 22)

OK, really tech dumb here. How do I search your posts?

by Sarah63 (Aug 22)

https://clinicaltrials.gov/ct2/show/NCT04006847

i cant get the link to work here but check my post under. fish oil and dasatinib
Category: Drug-food interactions

Replies: 6

Last updated: 23 August 2019
r06ue1 on 18 June 2019

Category: Treating CML

Replies: 33

Last updated: 23 August 2019

Non-Detectable (0.000%) and potential cure for CML
by kat73 (Aug 23)

So, let's serve up the pasta tossed with fish oil and topped with mucho white dairy, ground Brazil nuts and flavored heavily with turmeric - party time!! I'll eat it every day if it

by cmljax (Aug 23)

3 months after the .10% = .006%;
Starting in June of 2017 = have bounced between <.003% and undetected with most recent in June 2019 being undetected.
I have been on 150 mg/day Tasigna (1/4

by Sarah63 (Aug 22)

Wow that is a huge reduction all at once. Do you mind sharing some about your history since then?

by Sarah63 (Aug 22)

No, my PCR did not increase during breaks from Sprycel (one was 6 week break, another was 4 weeks). It rather kept going down. However, I was taking the adjunctive substances we are
Category: Treating CML

Replies: 33

Last updated: 23 August 2019
Riggered on 16 August 2019

Category: Blood tests

Replies: 15

Last updated: 23 August 2019

Fish Oil and Dasatinib
by scuba (Aug 23)

Any reputable D3 / K2 supplier is fine. Just make sure they are pharmaceutical grade and have high positive reviews.
The D3 I take comes in 5,000 IU capsules. The K2 I take has both MK-4 and MK-7

by Sarah63 (Aug 22)

Scuba,
You have become my secret guru. Now I let the secret out. LOL. I think as soon as I get Undetectable I will add curcumin and the other stuff you are doing. I see my doc today and

by Sarah63 (Aug 22)

Kat,
I don’t know for absolute certain, but the best I can gather (from sorting through the study details) is they have long been transplanting CML cells from one generation of mice to the

by scuba (Aug 22)

Hi Sarah,
I ordered and received the EPA fish oil you linked. I have been taking for a few days now at the 1000 mg dose.
Unfortunately, for the clinical trial listed above, I am not a candidate
Category: Blood tests

Replies: 15

Last updated: 23 August 2019
peetyg on 16 August 2019

Category: Drug-drug interactions

Replies: 13

Last updated: 22 August 2019

American needs recommendation for reputable Canadian pharmacy.
by alliswell (Aug 22)

Sorry dont have direct answer for you question but i think your chance to get an answer here is more likely.
https://communityview.lls.org/groups/chronic-myeloid-leukemia
this is the us forum for

by peetyg (Aug 22)

Everybody. Sum how with all due respect. My daughter is an AML patient who medical team believes putting her on sprycel for maintenance drug. It is NOT covered by by US insurance companies. This

by kat73 (Aug 22)

Yes, there is more, particularly that in the prospective arm, 31 out of 36 patients retained MR4 on the maintenance regimen. But, again, these people were taking more than 20 mg Sprycel.

by Buzzm1 (Aug 22)

kat73, I found this:
Abstract: PS1121
MAINTENANCE THERAPY WITH DASATINIB ADMINISTRATED EVERY OTHER DAY IN PATIENTS WITH CHRONIC MYELOID LEUKEMIA Clemence Loiseau
Aims
We first
Category: Drug-drug interactions

Replies: 13

Last updated: 22 August 2019
ipmaki on 29 April 2019

Category: Treating CML

Replies: 30

Last updated: 22 August 2019

Sprycel - Lack of Response
by kat73 (Aug 22)

Yes, Scuba, I think there is a connection. My Vitamin D was super low at diagnosis. Love your roach/burn the house down analogy - makes perfect sense.

by scuba (Aug 22)

See Kat's response.
Blasts % is reported with every CBC and if zero blasts, often not reported at all.
Blast cells are very fast differentiating cells. They do not stay long as blast cells ....

by kat73 (Aug 21)

I asked this question of my onc once. His reply was that IF there are blasts, they will be recorded on your CBC. The fact that nothing is mentioned means there are no blasts detected.

by ipmaki (Aug 21)

Hi Scuba and others. I just want to follow-up on my question regarding the frequency of tests for blast %. I got my last one about 5 months ago with 0%. Do you know if most people get this tested
Category: Treating CML

Replies: 30

Last updated: 22 August 2019
ColoradoGuy on 16 August 2019

Category: Side effects

Replies: 2

Last updated: 21 August 2019

Dull Pain In Left Buttocks
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: 2

Last updated: 21 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
AlastairC on 6 October 2017

Category: Treating CML

Replies: 62

Last updated: 20 August 2019

Imatinib Dose Reduction Starts
by AlastairC (Aug 20)

Another visit to the clinic today. June BCR-ABL 0.02% - all other results fine (for me - I am still neutropenic, but in the range I have been for 30+ years). Consultant happy that all is stable; he

by AlastairC (Jun 12)

Hi Chrissie, I was worried about my 0.03 a couple of months ago but have gone back to 0.01 this time, so hope you go the same way.
Best
Alastair

by chrissie (Jun 12)

Thanks, Scuba. Hope you are doing OK
Best
Chrissie

by scuba (Jun 12)

Chrissie - consider switching drugs if you have to go back. Low dose dasatinib is a good alternative (i.e. < 40 mg).
Data suggests that rotating TKI drugs may do more to increase TFR success than
Category: Treating CML

Replies: 62

Last updated: 20 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
israel on 17 June 2019

Category: Treating CML

Replies: 7

Last updated: 18 August 2019

Looking to reduce dosage of Imatinib 600mg to 400mg
by israel (Aug 18)

Hi all,
I want to give an update on my treatment since I last opened this thread.
In July, I started to take a reduced dose of Imatinib every other day, alternating between 600mg today and 400mg

by israel (Jun 19)

Hi Poppert!
I didn’t have any PCR tests in between February 2015 and February 2016. My national healthcare system isn’t able to provide the optimal PCR test frequency, so big gaps

by israel (Jun 19)

Hi Scuba!
Thank you for the information and the words of encouragement.
I have been researching about possibilities to reduce my Imatinib dose for some time. This forum has been very, very helpful

by israel (Jun 19)

Hey Lucas!
Yes, I’m Brazilian! I live in Florianópolis, where I have been under treatment since my CML diagnosis.
I know of Abrale and think this organisation does an amazing job of raising
Category: Treating CML

Replies: 7

Last updated: 18 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
ian hinley on 17 October 2018

Category: Treating CML

Replies: 59

Last updated: 16 August 2019

Starting TFR in November after 9 years of daily drugs
by kat73 (Aug 16)

So happy for you, Ian! As far as I know, you are the only person I can think of here who has stopped TKI's successfully without being declared undetectable first. I know that two

by ian hinley (Aug 16)

Latest results are very encouraging down to 0.017 from 0.031 last month and 0.043 and 0.067 months previous.
Saw CML Specialist in Kings last week and he said all is going very well and the pattern

by scuba (Aug 2)

Good to read on 16 months TFR!
This selenium idea has me very intrigued. I alternate between brazil nuts (two - four a day) and a 200mcg supplement. I never take both at the same time, but figure

by alison (Aug 2)

Didn’t mean to hijack Ian’s thread, but happy to report my husband’s 16 month TFR PCR down from .18 to .111. @Scuba Added a third Brazil nut daily . That means
Category: Treating CML

Replies: 59

Last updated: 16 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
Rick B on 14 May 2019

Category: Uncategorised

Replies: 30

Last updated: 16 August 2019

CML and Prostate Cancer - Need Wisdom
by Nimbus2 (Aug 16)

Thank you, John, for your kind response. I feel for Rick and yourself in having to contend with two cancers.
Whilst my PSAs have been very low with frequent measurements over the course of about six

by johnw1001 (Aug 15)

Hi,
The normal range for the PSA test is 0.0 to 4.40 but with age the upper limit is sometimes raised because as we grow older into our 70 s and 80 s the prostate gland becomes enlarged anyway.

by Nimbus2 (Aug 12)

My PSA is always in the order of 0.45. My next test is in November. I have symptoms including severe nocturia that would point to prostate difficulties . I was prescribed with oxybutinin and

by johnw1001 (Aug 1)

Hi Rick,
Just to update on the safety of combining imatinib and radiotherapy I have come across a short article that suggests that a combining a targeted agent such as imatinib with radiation
Category: Uncategorised

Replies: 30

Last updated: 16 August 2019
Tanya Cuffe on 14 August 2019

Category: Uncategorised

Replies: 2

Last updated: 16 August 2019

Next level fatigue...
by Tanya Cuffe (Aug 16)

Thank you for that,yes I took a good B today so hopefully will help.I often take ginseng with guarana and then add pseudoephedrine and that keeps me awake but then I don’t sleep!Will try stick

by Tazdad (Aug 16)

I took a really good B vitamin. I used the Now brand and it seemed to help. It Now 100 B complex. It did take a little while to get enough in my system to feel the difference. I still struggle with

by Tanya Cuffe (Aug 14)

Hey friends,Fatigue on 50mg Sprycel getting harder and harder to tolerate. Am exhausted after sweat drenched nights wherein I wake up at least 5 times.Constant fatigue now along with mood issues.
Category: Uncategorised

Replies: 2

Last updated: 16 August 2019