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mamodei on 22 November 2019

Category: Blood tests

Replies: 2

Last updated: 25 November 2019

BCR-ABL1 0.08 at 6 months
by koralia.pappi (Nov 25)

Congrats! Great news :)

by David Fitz (Nov 24)

0.08% after 6 months of treatment is stellar! An “optimal” result it anything below 1%, so you are miles below that. In fact you are below the optimal result expected at 12 months.
Quite

by mamodei (Nov 22)

I got great news today. My PCR result is 0.08 at just shy of 6 months on treatment. News like this does help.
I started on nilotinib, but had trouble with side effects culminating in a
Category: Blood tests

Replies: 2

Last updated: 25 November 2019
koralia.pappi on 21 November 2019

Category: Blood tests

Replies: 2

Last updated: 24 November 2019

Eosinophils
by koralia.pappi (Nov 24)

Hi Labros,
Thanks for the reply

:-)
Well, my doctor indeed told me :"you worry too much"!
This woman, she is great, answering all kinds of weird questions, although I can be a pain in the a

by labros (Nov 22)

Hello Koralia,
I don't think you should worry about your eosinophils, since they are still very close to the normal range. My doctor have mentioned to me that increased eosinophils should alert

by koralia.pappi (Nov 21)

Hi all,
I have a quick question about my blood tests. I was diagnosed 6 months ago, and I'm on Tasigna. Last PCR (3.5 months) was 0.32%, which is pretty good. I am now waiting for my results of
Category: Blood tests

Replies: 2

Last updated: 24 November 2019
anonimouse on 14 February 2018

Category: Treating CML

Replies: 41

Last updated: 24 November 2019

Has anybody been able to reduce their dosage of Sprycel?
by kali (Nov 24)

Hello to all,
in response to this thread, I have been on 20 mgm of Sprycel as well for several months and still undetectable!! No side effects and all blood work is normal.
My onc says I am

by Sunny (Nov 24)

Thank you Scuba. You are very knowledgeable, and your responses are always illuminating and very informative.
Especially where I am concerned as I am on Dasatinib myself.
Too bad I can't follow

by anonimouse (Nov 23)

It's been nearly a year since I originally posted and also, stopped taking Sprycel (after a tapering off period of months) after this post at the end of December 2018. I am happy to say

by anonimouse (Nov 23)

It's been nearly a year since I originally posted and also, stopped taking Sprycel (after a tapering off period of months) after this post at the end of December 2018. I am happy to say
Category: Treating CML

Replies: 41

Last updated: 24 November 2019
Alaina on 1 November 2018

Category: Uncategorised

Replies: 10

Last updated: 23 November 2019

Vitamin D...Help!
by scuba (Nov 23)

Anonimouse -
Thank you for the kind words. I read a great deal about Curcumin & vitamin D regarding depression and was surprised at the significant amount of information that was available.

by anonimouse (Nov 23)

Just want to say thank you to you. I read a lot of what you posted about Vit D, K2 and Curcumin and although I was already taking a lot of Curcumin, what really changed my life for the better

by Alaina (Nov 2)

Thank you for the hyperlinks. Great info.

by Alaina (Nov 2)

It is certainly thought provoking for sure.
Category: Uncategorised

Replies: 10

Last updated: 23 November 2019
Mick E on 15 November 2019

Category: Uncategorised

Replies: 14

Last updated: 22 November 2019

Nilonotib and pancreas/stomach issues
by Mick E (Nov 22)

That’s a very thorough service they did while they were in there!
It must have been a huge relief getting some relief from all the associated problems it caused!!
Mick

by David Fitz (Nov 22)

Hey Mick,
Me too ... GERD was pre-CML but I managed it with PPIs and that worked fairly well to be honest.
When they opened me up, they found it was a case of having a pretty loose connection

by Mick E (Nov 21)

David the information is worth knowing as I may have been suffering GERD symptoms prior to being diagnosed with leukaemia. Hopeful to get some clarification on the cause of that soon.

by David Fitz (Nov 21)

Mick, I lost nearly 20kg (I’m not a big guy to begin with) so have made many a joke about the leukaemia diet over the years!
It wasn’t a complicated procedure, but it was a fairly major
Category: Uncategorised

Replies: 14

Last updated: 22 November 2019
Anya226 on 20 November 2019

Category: About CML

Replies: 3

Last updated: 22 November 2019

Tasigna and skin rash
by alexmcpee (Nov 22)

Hi there,
I’ve been on Tasigna for 19 months and yes you will get little red pimples at the hair follicle. I have them on my scalp, arms and legs and other areas. It doesn’t itch and is just

by Naj (Nov 21)

Hi Anya,
I have been also taking Tasigna since Jan 2017 ( was diagnosed on Dec 2016).

After first couple months I also had severe rash ( underneath my arms, at backs, crouches..) , very itchy

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: 3

Last updated: 22 November 2019
Sharon7 on 19 November 2019

Category: Treating CML

Replies: 9

Last updated: 22 November 2019

Frequency of blood tests for newly diagnosed
by Sharon7 (Nov 22)

Hi there,
Thanks so much for the Tasigna info and references. I had a gut feeling that leaving his blood test for a month was too long and I decided to just book him in with our GP to get bloods

by Sharon7 (Nov 22)

Hi Kat,
I wouldn't have thought to ask about how low the specialist would be prepared to go before he stops meds. As you said, that will save us worrying even more if his numbers continue to fall

by RC Kirk (Nov 21)

Hi Sharon, Here's a quote from the prescribing information for Tasigna: https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=2ahU...
5 WARNINGS

by kat73 (Nov 21)

That's good news, Sharon. Be prepared for the numbers to go even lower for awhile. A good thing to do in order to forestall anxiety is to ask your onc what the parameters of safety
Category: Treating CML

Replies: 9

Last updated: 22 November 2019
Sharon7 on 19 November 2019

Category: Uncategorised

Replies: 4

Last updated: 21 November 2019

Hello new member here
by Sharon7 (Nov 21)

Hi Mark,
Thanks for responding to my first post and for your kind and encouraging words. We have been through a rollercoaster of emotions and things are starting to settle and we are getting used

by Sharon7 (Nov 21)

Hi Dusty,
Thanks for responding to my first post. We definately feel in a better place being a part of this group with so much information available and we truly appreciate the valuable support. It'

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
Category: Uncategorised

Replies: 4

Last updated: 21 November 2019
Jenny9391 on 19 November 2019

Category: Uncategorised

Replies: 2

Last updated: 20 November 2019

Stem cell transplant is a definate!
by Jenny9391 (Nov 20)

Its tough! But you plod along and get on the best you can. Thankyou very much also hoping if you need one you are matched and all is well in the end. Fingers crossed its a speedy recovery

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: 2

Last updated: 20 November 2019
MarkP66 on 20 November 2019

Category: Treating CML

Replies: 10

Last updated: 20 November 2019

Advice on reaching CMR
by MarkP66 (Nov 20)

Many thanks Scuba. I really appreciate it for taking the time to explain the details.
Hopefully I will have the latest results by Friday and will report on the PCR results.
Have a great

by scuba (Nov 20)

When you have your labs in front of you, report what it says regarding "bcr-abl" (PCR) and/or FISH. Your CBC blood counts look fine (which is why you are not "sick").
During

by MarkP66 (Nov 20)

Hi
I’m not local to home at the moment but from memory the PCR was 38%. I am not sure if the FISH test ? I had a BCR Abl test from bloods at the start of my diagnosis which seems to take

by scuba (Nov 20)

Hi Mark,
What are your lab results in terms of PCR and FISH?
Reporting your actual lab results here can better inform us on what you should expect.
FISH is reported as a percentage of cells under
Category: Treating CML

Replies: 10

Last updated: 20 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
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
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
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
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