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David Fitz on 12 October 2019

Category: Uncategorised

Replies: 10

Last updated: 1 November 2019

PinnedVideos of UK CML Patient Day now available
by Iyadede (Nov 1)

Thanks David for sharing. The videos are very informative

by David Fitz (Oct 22)

Thanks! I don’t think there are similar events in the US, at least not as coordinated. You could get in touch with Joannie and Jerry Clements at CML Busters in the US who are clued into US

by domonthebay (Oct 22)

Thanks for posting this content... I am in the US, not sure if there are events like this here (likely there are) but I am only 3 months into my journey with CML so still in heavy discovery mode...

by Mixail (Oct 19)

Thank you for posting. The videos where very informative.
Category: Uncategorised

Replies: 10

Last updated: 1 November 2019
MarkP66 on 20 November 2019

Category: Treating CML

Replies: 5

Last updated: 20 November 2019

Advice on reaching CMR
by kat73 (Nov 20)

Mark, I'm wondering if this is a semantic mistake. No onc - let alone a hem onc - would ever expect CMR at 3 months! It's quite possible (if he used the word "complete

by cmljax (Nov 20)

Hi Mark:
It is way too early for you to consider either a change in dose or a change in TKI. The NCCN guidelines call for MMR (PCR at or better than .1% IS) by 12th month of treatment.

by Felix (Nov 20)

Hi Mark ,welcome to the club.I am nearly 2 years in not quite undetected yet it takes time we all have our own speed ,and not an expert but learning a lot from the wonderful people on here .Your

by MarkP66 (Nov 20)

Thanks Nimbus I appreciate your response and support of my questions.
I wish you all the best on this journey as well.
I’m with you and the cramps and leg and joint pains are a
Category: Treating CML

Replies: 5

Last updated: 20 November 2019
Anya226 on 20 November 2019

Category: About CML

Replies: 1

Last updated: 20 November 2019

Tasigna and skin rash
by cmljax (Nov 20)

You probably have either petechiae or folliculitis or both. I had both and still have mild folliculitis on my scalp even though my dose is now down to 150 mg/day. There are simple

by Anya226 (Nov 20)

I have been on tasigna for 3 weeks and developed a rash the first week. My docv is aware and because it is not that uncomfortable he said to continue with the medication and to monitor the rash but
Category: About CML

Replies: 1

Last updated: 20 November 2019
Mick E on 15 November 2019

Category: Uncategorised

Replies: 6

Last updated: 20 November 2019

Nilonotib and pancreas/stomach issues
by cmljax (Nov 20)

Try DigestGold right before you eat. That helped me in the early phases of 600 mg Tasigna. I also ate more smaller meals throughout the day and that helped a bit. Also, probiotics have helped

by Anya226 (Nov 20)

Hello,
I am new on Tasigna for about 3 weeks. The first week I started to get bad stomach pains that felt like contractions and disturbed my sleeping and eating. I spoke with my doc and they allowed

by Mick E (Nov 18)

Yes smaller meals with high nutrition appears to be good general advice. Now also purchased protein powder to supplement the diet. 🤞

by mamodei (Nov 16)

I don't know why it affects the gut. I have gut problems anyway so assumed it was me. Even on the dasatinib I do better with smaller meals and eating some of my food as snacks,
Category: Uncategorised

Replies: 6

Last updated: 20 November 2019
Sharon7 on 19 November 2019

Category: Uncategorised

Replies: 2

Last updated: 20 November 2019

Hello new member here
by MarkP66 (Nov 20)

Hi Sharon
I am so sorry to hear of your husbands diagnosis and the hurt your family are going through.
As a newly diagnosed member to this site 4 months ago I feel for you and your

by Dustylloyd (Nov 19)

Hi Sharron and family, just read your story involving your husbands recent diagnosis and confirmation of having Cml, every thing you described was as if probably 99% of us “members” had

by Sharon7 (Nov 19)

Hi everyone, hubby just been diagnosed with Chronic phase CML after feeling tired and experiencing pain in shoulder and under left rib. Went to doctor straight away had bloods done on the Tues,
Category: Uncategorised

Replies: 2

Last updated: 20 November 2019
Sharon7 on 19 November 2019

Category: Treating CML

Replies: 2

Last updated: 19 November 2019

Frequency of blood tests for newly diagnosed
by kat73 (Nov 19)

Yes, I see where your concern lies. With hydrea, super low counts are a worry. It might have been better to have had blood drawn after two weeks, but you're so close to the scheduled

by Aeje10327 (Nov 19)

Hi, my cbc was checked every 2 wks after diagnosis to make sure meds weren't dropping counts too low. Now monthly. I was diagnosed early September. I am sorry you guys are part of this horrific

by Mick E (Nov 19)

Really sorry to hear of you Husbands diagnosis! Most of the treatment plans are highly successful in controlling the disease so hopefully you will both be in a better place very soon! 🤞

by Sharon7 (Nov 19)

Hubby was recently diagnosed with Chronic phase cml. He spent 10 days on hydrea then went straight on to nilotinib. Had bloods done throughout the first 7 days ( while in hospital). Then three days
Category: Treating CML

Replies: 2

Last updated: 19 November 2019
bendicco on 19 November 2019

Category: Blood tests

Replies: 2

Last updated: 19 November 2019

Should I worry?
by bendicco (Nov 19)

Thank you Kat! Thank You!

by kat73 (Nov 19)

Major molecular response (MMR, or MR3) is 0.1. You are a couple of logs' worth beyond (below) that, congratulations! In many labs, your number would not even be reported - they would

by bendicco (Nov 19)

Hi all. I see a doc at Sloan in NY . Six months ago my CML bloods registered 0.002 then three months ago it was not detectable. I was so excited! Had my bloods drawn again last week and just
Category: Blood tests

Replies: 2

Last updated: 19 November 2019
Jenny9391 on 19 November 2019

Category: Uncategorised

Replies: 1

Last updated: 19 November 2019

Stem cell transplant is a definate!
by Mick E (Nov 19)

Really sorry to read about you daughters current situation. It’s hard enough seeing your children have to endure minor ailments so you and all the family must be really going through it

by Jenny9391 (Nov 19)

So my daughter is definatly having a stem cell transplant within the next month to 6 weeks. Both imatinib and disatinib have failed to bring the disease under control with both bcr abl and fish
Category: Uncategorised

Replies: 1

Last updated: 19 November 2019
Simon Allchin on 18 November 2019

Category: Treating CML

Replies: 2

Last updated: 19 November 2019

What are the highs and lows of a stem cell transplant?
by Simon Allchin (Nov 19)

Thanks, will read the link this evening. Haven’t given up on TKIs yet, still part of an Asciminib trial and will also try Basutinib if the former is too unkind. Already been pulsing for two

by scuba (Nov 19)

No sugar coating:
https://www.nature.com/articles/s41409-019-0624-z
"Death after hematopoietic stem cell transplantation: changes over calendar year time, infections and associated factors

by Simon Allchin (Nov 18)

Looking increasingly likely none of the TKIs are going to be kind enough to my good blood cells to allow me to continue treatment with them so was just wanting to hear the experiences of anyone who
Category: Treating CML

Replies: 2

Last updated: 19 November 2019
gbatalha on 11 November 2019

Category: Uncategorised

Replies: 8

Last updated: 18 November 2019

18 months result
by kat73 (Nov 18)

You did not mention the 35 bp insertion before. That does indeed call for more monitoring, as you have undoubtedly read amongst the studies a Google search will bring up. Your doctor

by RC Kirk (Nov 18)

Hopefully your 18 month PCR result isn't a sign of a problem and your doctor is just being cautious. My PCR scores have also wandered a bit through the years.

2012 118.683%,

by gbatalha (Nov 18)

Hi everyone,
Apologies in coming back to this topic, given the rise in bcr abl my doc ordered me to urgently (today) do a blood test and a new quantification of bcr-abl combined with a new

by gbatalha (Nov 13)

https://ashpublications.org/hematology/article/2016/1/156/21036/Molecula...
Figure 1.
G
Category: Uncategorised

Replies: 8

Last updated: 18 November 2019
Ghraut70 on 15 November 2019

Category: Reproductive health

Replies: 4

Last updated: 17 November 2019

Swollen lymph nodes
by Ghraut70 (Nov 17)

Hi Martin,

Thanks so much for your response and yes please I would like to have the articles. My email address is rautgeraldine@yahoo.com.

it so unfortunate that I developed swollen

by Ghraut70 (Nov 17)

Thanks so much Alex.

by MartinZA (Nov 16)

Hi there
I am the patient who developed swollen lymph nodes on Sprycel. They kept growing and eventually were the size of golf balls.
There is definitely a link to swollen lymph nodes and dasatinib

by alexmcpee (Nov 16)

Hi
Their is defo a link with swollen Lymph Nodes and Sprycel. I have a CML friend who was on Sprycel and was taken off as they appeared to enlarge the nodes. It’s rare but best to be mindful
Category: Reproductive health

Replies: 4

Last updated: 17 November 2019
Vikram on 12 November 2019

Category: Uncategorised

Replies: 4

Last updated: 16 November 2019

IMTINIB (GLEEVEC) and generic
by Nimbus2 (Nov 16)

I raised this matter using the United Kingdom Medicines and Healthcare Products Regulatory Agency (MHRA) Yellow Card scheme. Here is an extract from the MHRA response. My main problem was with the

by Vikram (Nov 15)

Thank you for your reply

by johnw1001 (Nov 13)

Hi All,
The most informative difference I have gleaned between the branded glivec and the generics which followed the expiry of patents held by Novartis is from the site of the CML Society of Canada

by AlastairC (Nov 12)

Vikram there is a leaflet here which explains about generics.
Simple answer is that Novartis developed imatinib and sold it as Glivec/Gleevec while it was still under patent. When the patents
Category: Uncategorised

Replies: 4

Last updated: 16 November 2019
Tanya Cuffe on 15 November 2019

Category: Uncategorised

Replies: 8

Last updated: 16 November 2019

Undetectable 6months 50 mg Sprycel
by Tanya Cuffe (Nov 16)

Thanks,friend:)

by Tanya Cuffe (Nov 16)

Thanks heaps Chuckster,yes I hope so too!

by Tanya Cuffe (Nov 16)

Thanks Denise:)it’s only cause of info from this site that has informed me as to best way with Sprycel eg lower dose,taking Tumeric,D vitamins and Magnesium and all the other help!Hope yr well

by Felix (Nov 16)

Hi Tanya ,fabulous news ,whatever you are doing keep doing it it's working haha .Love Denise.
Category: Uncategorised

Replies: 8

Last updated: 16 November 2019
domonthebay on 11 November 2019

Category: Side effects

Replies: 3

Last updated: 15 November 2019

Update on side effects from Sprycel
by Mick E (Nov 15)

Thanks for the reply!
the current 600mg daily has today broken me. Struggled to even slow jog short distance and breathlessness walking, this cannot be normal! The only

by domonthebay (Nov 15)

My doctor (head of the Leukemia dept. at Hopkins) seems to think I respond well to these TKIs (despite the side effects) and he favors the lower doses to reduce the long term cardiac and other more

by Mick E (Nov 11)

Do you know why they decided to start the dosage at 150mg twice daily? I’m currently on 300mg twice daily and from what I have read that 600mg daily appears to be a lower dose than

by domonthebay (Nov 11)

First, thanks for all the feedback from everyone. Side effects are: shortness of breath, heart palpitations (minor) itching (major) and chest pains (worse at first then fading to almost never
Category: Side effects

Replies: 3

Last updated: 15 November 2019
r06ue1 on 15 November 2019

Category: Treating CML

Replies: 2

Last updated: 15 November 2019

Researchers find potential new treatment for chronic myeloid leukemia
by Vikram (Nov 15)

Amazing......
Finger cross.....
But.....
Mice trial and human trial different....
Miristen 126 cure Cml in mice..... Reserch continue......
No update and news...... About miristen 126 ..... Last

by Mick E (Nov 15)

That is an amazing discovery! 😁
lets hope that it works as successfully in humans and that it will also help improve the understanding of other disease characteristics!🤞

by r06ue1 (Nov 15)

Sounds like a cure to me.

When they combined the antibody and TKI treatments, the CML cells could not grow at all, Chute added.
“The combination of this antibody with
Category: Treating CML

Replies: 2

Last updated: 15 November 2019
Chuckster on 11 November 2019

Category: Blood tests

Replies: 5

Last updated: 15 November 2019

Latest Blood Test Results BCR/ABL1 .
by Chuckster (Nov 15)

Thanks Kat.
I started at 100MG of Sprycel when first diagnosed in Feb 2018
That lasted about 3 weeks with horrendous side effects.
I have a bi-level home and I could not even go up the seven steps

by kat73 (Nov 14)

Chuck - This is great! I actually got a mumbled sort of growly apology from my onc the last time, saying he was impressed by how I pushed him into a new way of looking at 20 mg. Now, if

by Chuckster (Nov 14)

Just got the BCR/ ABL1 ONCOLOGY : FISH results from 10/31/2019.
FISH (IS) : 200 Cells: Negative, Not Detected!
( Prior results were 2.5% June & 1.5% August 2019)
Looks like Scuba is

by Chuckster (Nov 12)

Thanks David!
Category: Blood tests

Replies: 5

Last updated: 15 November 2019
koralia.pappi on 3 November 2019

Category: Side effects

Replies: 6

Last updated: 14 November 2019

Nilotinib and heart palpitations
by David Fitz (Nov 14)

I've had this from time to time as well. Recently, the 3-point ECG on my smart watch was indicating unusual results and I wasn't feeling 100% at the time. Like you, it cleared up on its own

by koralia.pappi (Nov 14)

Hi Alex, cmljax,
Thank you both for your answers. A week later, all I can say is that, whatever it was, it was cyclic, and went away after a week.
It could be stress, or it could be some minor

by cmljax (Nov 9)

Could be all caused by stress/anxiety, but I am pretty sure that my recurrence was not. I think for me the palpitations are caused by the TKI and perhaps exacerbated stress.

by alexmcpee (Nov 8)

Hi Koralia,
I have been on Nilotinib for 19 months after 3 months on treatment and I had palpitations that lasted for around another 3 months. The diagnosis affected me really hard mentally and
Category: Side effects

Replies: 6

Last updated: 14 November 2019
Basil from RSA on 9 November 2019

Category: Uncategorised

Replies: 10

Last updated: 13 November 2019

News from Basil in South Africa
by Basil from RSA (Nov 13)

Thank you for you kind words. I try to use my good fortune to inspire and encourage all CML patients to achieve what was initially thought as unachievable.
Our special FB Group called

by chrissie (Nov 13)

Wow Basil. tremendous news. many, many congratulations. Your success gives us all hope for the future and is especially helpful and optimistic for "newbies".
Best
Chrissiex

by Basil from RSA (Nov 12)

Thank you very much.

by Vikram (Nov 12)

Congratulations basil
Category: Uncategorised

Replies: 10

Last updated: 13 November 2019
slindon2 on 9 November 2019

Category: Blood tests

Replies: 2

Last updated: 11 November 2019

BCR/ABL after 4 years
by slindon2 (Nov 11)

David
Thanks for your quick response. I am on 100mg Dasatinib. I take no other medication prescribed or over the counter. I havent had a cold or flu for about 6 years. The only thing i have

by David Fitz (Nov 10)

Hi Paul,
There are quite a few forum members who took many years to reach MMR, and many others too who have got close but never quite got there. I recall a seminar with a CML specialist and his view

by slindon2 (Nov 9)

Hi all
its been a while since i looked for some advice so here goes...
Im coming up for 4 years since diagnosis.
After 2 years on Imatinib I went resistant, I should have been changed to
Category: Blood tests

Replies: 2

Last updated: 11 November 2019
Mick E on 10 November 2019

Category: Uncategorised

Replies: 2

Last updated: 11 November 2019

Lung problems
by Mick E (Nov 11)

Dasatinib had the same effect on me. When I first started at 100mg I was having serious problems even resting. The dosage was subsequently lowered to 50 then 25mg but the problem

by domonthebay (Nov 11)

I am sorry you are going through this side effect. I hope it gets better and eventually ends altogether. Its a terrible feeling. I have very minor but noticeable shortness of

by Mick E (Nov 10)

Have any of you developed lung problems or had lung conditions exacerbated whilst taking Imatinib or Nilonotib?
i have started to have a worsening problem with a dramatic drop in exercise tolerance
Category: Uncategorised

Replies: 2

Last updated: 11 November 2019