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Clarek on 30 July 2018

Category: Treating CML

Replies: 5

Last updated: 14 August 2018

BCR results
by David Fitz (Aug 14)

Hi Clare,
One set of targets which is often discussed as a good indicator is reaching 10% by 3 months. Then 1% at 6 months, and 0.1% by 12 months. These would be considered "optimal" responses

by ColoradoGuy (Aug 14)

I would say as long as you are trending in the right direction you are still good. Mine looked like the following:
64%, 23% (6 months), 1.8% (9 months), 12 month at the end of this month.

by Clarek (Aug 14)

Hi,
I asked about my PCR tests and apparently I've had 3. The results of the 1st one in February was 82%, then May was 22% and this months went down to 2.4%, and I still don't know if this is ok.

by David Fitz (Jul 30)

Hi Clare,
It's common not to have a PCR test (which tests for the existence of BCR-Abl, the fusion protein that drives CML) until 3 months after diagnosis. However, that means you ought to
Category: Treating CML

Replies: 5

Last updated: 14 August 2018
Trevorp93 on 12 August 2018

Category: Treating CML

Replies: 4

Last updated: 13 August 2018

Sprycel 100mg Help with returning of an a eye floater
by Gitel (Aug 13)

How common this is with CML I do not know. Ask your Onc, but do see an ophthalmologist who knows about the retina. Floaters do appear when the ball of fluid in your eye separates from the retina. In

by Trevorp93 (Aug 13)

Hi everyone thanks for getting back to me on this. I went to the emergency room for this and they recently told them that this was a vitreous hemorrhag. I was trying to see if anyone has gone though

by David Fitz (Aug 13)

Hi Gitel,
It sounds like I had similar problems to you. CML made me lose quite a lot of eyesight - I couldn't see things in the centre of my vision very well. For example, I could not read text on a

by Gitel (Aug 13)

I thought eye floaters were related to the retina. When I had them, and they stayed, I was sent to an ophthalmologist who found I had a slight tear in the retina. part of aging. They had healed.
Category: Treating CML

Replies: 4

Last updated: 13 August 2018
rosegunton on 27 July 2018

Category: Uncategorised

Replies: 8

Last updated: 13 August 2018

CML Birmingham Support Group
by Nimbus2 (Aug 13)

Thank you for arranging Saturday's support group meeting.
Joanne Mason's excellent presentation answered many questions that were floating around in my mind.
I took the advice of the

by Nimbus2 (Aug 2)

Almost every little boy or girl can join Facebook without issue, but a 62-year-old man with CML is locked out. It is impossible to communicate with these people. They even have a copy of a

by David Fitz (Jul 30)

Hi Stephen, I had this same experience when signing up to Facebook. A right pain. Worth persisting though, eventually it did all work and I never had a log on issue since. I still don't quite know

by Nimbus2 (Jul 30)

I am locked out of Facebook again ("unusual activity on your account") and near the point of giving up. I have sent then yet another photograph. Third attempt!
Category: Uncategorised

Replies: 8

Last updated: 13 August 2018
Stacey Doubblestein on 8 August 2018

Category: Children & young people

Replies: 7

Last updated: 11 August 2018

First FISH results
by David Fitz (Aug 11)

The Emperor of all Maladies is fascinating. I read it when I was diagnosed with CML, just to understand cancer better. Came as a total shock to find the book opens with CML! Really well written book

by kat73 (Aug 11)

Great book. Also read The Emperor of All Maladies (there's some CML overlap). Big fat book but a swift read - fantastic.

by Stacey Doubblestein (Aug 10)

I listened to the Audible book The Philidelphia Chromosome it is amazing how they figured this out and how lucky the newly diagnosed wont suffer as much as those before

by Stacey Doubblestein (Aug 10)

Thank you so very much - we feel so much more at ease now
Category: Children & young people

Replies: 7

Last updated: 11 August 2018
onekayaker on 9 August 2018

Category: Uncategorised

Replies: 22

Last updated: 11 August 2018

Newly diagnosed and looking for feedback on first few days taking tki pills
by scuba (Aug 11)

Thanks David!

by David Fitz (Aug 10)

Private messaging coming soon ... it's on the list of top priorities (after better spam management!).
David.

by scuba (Aug 10)

One Kayacker,
I don't believe this forum has a private message mechanism. I would not post your email address here. Perhaps David has a way.
Why are you waiting 30 days before taking vitamin D3?

by onekayaker (Aug 10)

Scuba,
i did send a message to my leukemia doctor about the D3(learned this from your post). Wanting to wait 30 days before I go on that. When I joined I allowed people able to email me
Category: Uncategorised

Replies: 22

Last updated: 11 August 2018
Nimbus2 on 7 August 2018

Category: Uncategorised

Replies: 5

Last updated: 10 August 2018

Full Blood Count and IG
by Nimbus2 (Aug 10)

The doctor did mention this, Kat73, and you are quite right. I was commenting upon the Full Blood Count (FBC), but the doctor did mention that my Kidney function was slightly impaired. The blood

by kat73 (Aug 10)

You do, however, need to also keep an eye on some of the numbers on your CMP (Complete Metabolic Panel) which should be done every time you have the CBC done. Like: creatinine, BUN and

by Nimbus2 (Aug 10)

I now have some answers from the doctor. I am told that the automated instant FBC measurement machine typically fails to register BASO when the white blood count is high. The IG figure is of no

by Nimbus2 (Aug 9)

This was the answer that I could not Google satisfactorily. Thank you, David.
Looking back through my blood history, the Basophil count was the first thing to go wildly wrong (even before
Category: Uncategorised

Replies: 5

Last updated: 10 August 2018
Libby on 10 August 2018

Category: Uncategorised

Replies: 1

Last updated: 10 August 2018

Dasatinib
by Gitel (Aug 10)

My blood pressure has remained the same through Imatinib and dasatinib, except of course when I am riled up. However, in all routine testing it has remained about 125/70. I do not have an

by Libby (Aug 10)

I am on 100 dasatinib. I’ve noticed over the last few weeks that my blood pressure has risen to a high level (160/90). Is this normal for dasatinib - I’ve been on it since diagnosis 9 months
Category: Uncategorised

Replies: 1

Last updated: 10 August 2018
Romo on 7 August 2018

Category: Uncategorised

Replies: 7

Last updated: 10 August 2018

The Great Escape
by kat73 (Aug 10)

Thanks, Louise, I do have Netflix - I'll check these two out!

by LouiseS (Aug 9)

Kat if you love English gardens and have Netflix I recommend two UK shows to watch: Big Dreams Small Spaces with Monty Don and Alan Titchmarshes’ Love Your Garden which creates gardens to

by kat73 (Aug 9)

Louise - Sounds good I'm currently reading Penelope Lively's Life In the Garden. Astounding to me how many plants she mentions that I've never heard of - even now, after so much time.

by LouiseS (Aug 9)

Kat I would love to help you garden while we discussed Victorian literature. Gardening has always been my passion and stress reliever. I am sorry you can’t get out there as much as you want.
Category: Uncategorised

Replies: 7

Last updated: 10 August 2018
knifesl on 3 August 2018

Category: Treating CML

Replies: 9

Last updated: 9 August 2018

Diagnosed May 2018 - Sprycel 100mg (1st month) Sprycel 50mg (after MD Anderson visit)
by scuba (Aug 9)

Hi Susan - Thanks!
On Tom Petty and waiting:
“It was about waiting for your dreams and not knowing if they will come true,” Petty said. “I always felt it was an optimistic song.”
Like waiting for

by knifesl (Aug 9)

Scuba,
I'm very excited to hear your next stop is no drug! I really appreciate the information you provided. Thank you for telling your story, it does really help ease my anxiety. The waiting is the

by scuba (Aug 6)

Hi Susan,
A good reference to know about is the NCCN guidelines for CML:
https://www.nccn.org/patients/guidelines/cml/
This is what doctors who are not experts in the field rely on when treating

by knifesl (Aug 6)

kat73 - Thank you so much for sharing your story. I can't even imagine how frightening it was for you. "An eternity of black hole worrying" perfectly describes how I feel even with all the support
Category: Treating CML

Replies: 9

Last updated: 9 August 2018
Nimbus2 on 4 August 2018

Category: Uncategorised

Replies: 4

Last updated: 9 August 2018

Blood pressure
by Nimbus2 (Aug 9)

My blood pressure has returned to its customary level, around about130/80. It seems that my systolic blood pressure was lowered during the first couple of weeks of my taking Imatinib. I will mention

by David Fitz (Aug 5)

Well yes, it was tested on dogs as you wouldn't get a human trial like that past an ethics committee!
David.

by Nimbus2 (Aug 5)

Thank you, David. I have noticed some changes in my body mechanics that I will discuss with my haematologist on Friday. It may be that there is some drug interaction going on here.
Your second

by David Fitz (Aug 4)

That doesn't sound unwelcome!
My doctor tells me that there is some evidence that imatinib is somewhat cardioprotective.
Here's papers on the topic:

https://pdfs.semanticscholar.org/
Category: Uncategorised

Replies: 4

Last updated: 9 August 2018
Syd822 on 8 August 2018

Category: Blood tests

Replies: 3

Last updated: 8 August 2018

Possible Cancer...
by Romo (Aug 8)

Normally a bone marrow test is ordered to determine
what “Type“, of Leukemia the patient has.
It also can assess the stage of that type of leukemia.
There are four types of leukemia. Each type

by Syd822 (Aug 8)

With the FISH test I only had to give blood for. She said that depending on the results from that then I would do the bone marrow aspiration. I am also uncertain if the results are done since she

by David Fitz (Aug 8)

Hi there,
It's a pretty scary time when you are not sure what's going on inside of you. We all understand that phase of things.
To me it looks like your doctor is running a number of tests to look

by Syd822 (Aug 8)

So a few months ago I went to my physician for a yearly check up and she does blood tests every year. When she did this blood test my Iron was low in which it showed that I was Anemic and my white
Category: Blood tests

Replies: 3

Last updated: 8 August 2018
kat73 on 13 February 2018

Category: Uncategorised

Replies: 11

Last updated: 8 August 2018

Bosutinib and Pleural Effusions
by chigi (Aug 8)

Thanks Kat73.
i will keep everyone updated on my journey!

by kat73 (Aug 7)

Chigi - Yes, indeed, good luck! They never made me undergo a thoracentesis, although I know of others who had it done. I was just suspended from dasatinib for a couple of weeks and the

by chigi (Aug 6)

Thanks Kat73 for the great feedback and reassurance. X-ray today showed moderate PE and going in tomorrow again for a thoracentesis procedure. Will need to switch to Bosutinib.
Wish me

by kat73 (Aug 6)

Chigi - Don't ignore the symptoms; get them checked out. You just need your general practitioner to listen very LOW down on your back, to make sure he/she doesn't hear the characteristic
Category: Uncategorised

Replies: 11

Last updated: 8 August 2018
David Fitz on 2 August 2018

Category: Uncategorised

Replies: 4

Last updated: 8 August 2018

Slides and videos from CML Advocates conference, Warsaw, May 2018
by teddyb (Aug 8)

Thanks, very interesting.

by kat73 (Aug 3)

Wow, thanks for posting all this, David! I look through a little bit of it each day. It's so interesting to see how the topics of discussion themselves have changed over the years, not

by nigel (Aug 2)

Many thanks for posting these David, a very interesting couple of days, and some great presentations, well worth time spent to watch sections that may be of interest to each of us.

by Poppert (Aug 2)

There are some really interesting videos there, thanks! I watched a handfull, worth checking out for those interested in learning more of updates in treatment recommendations, current research and
Category: Uncategorised

Replies: 4

Last updated: 8 August 2018
RC Kirk on 6 August 2018

Category: Treating CML

Replies: 2

Last updated: 7 August 2018

Early PCR testing is a good idea
by kat73 (Aug 7)

Gitel - Your observations are on point. Also, although I too read it quickly, I couldn't seem to find the TRUE bottom line, which is: what was termed "success"? PCR undetectable?

by Gitel (Aug 6)

Thanks for posting the link. Impressive study. I have only read it quickly. If I understood what I read:
This is a pretty scary article for anyone who has not achieved <10% at 3 months, or

by RC Kirk (Aug 6)

Here's a link to recently published research about PCR numbers. (Found this at the LLS site) I haven't read the whole thing, but it sounds like confirmation that PCR tests should be routine for all
Category: Treating CML

Replies: 2

Last updated: 7 August 2018
Luke on 6 August 2018

Category: Uncategorised

Replies: 14

Last updated: 7 August 2018

Interferon Therapy
by David Fitz (Aug 7)

Sorry, I have absolutely no idea where you could procure any type of interferon.
David.

by Luke (Aug 7)

Thank you, David.
My doctor will start me on imatinib first without waiting for the interferon.
Do you know where and how I can obtain pegylated interferon with a doctor's prescription? Is it

by David Fitz (Aug 7)

Luke, look into pegylated interferon. It has a much much lower side effect profile than "normal" interferon, and it is the type of interferon that has been studies with Imatinib the most. But either

by RC Kirk (Aug 7)

Luke, I hope you're not waiting to start treatment with Glivec until you can get the Interferon. I don't have any idea how to get a prescription filled from another country. It seems the
Category: Uncategorised

Replies: 14

Last updated: 7 August 2018
Rick B on 9 July 2018

Category: Drug-drug interactions

Replies: 13

Last updated: 6 August 2018

Imatinib and Statins
by Gitel (Aug 6)

Thank you for posting the article and for the explanation which was most helpful. Gitel

by David83 (Aug 6)

That’s a real help, thank you very much David. Certainly explained in a way I can understand before I’ve managed to do more in depth reading on the subject.
I think I’m going to see if my GP

by David Fitz (Aug 6)

Hi David, the simplest way I can explain how other drugs increase uptake is the same mechanism behind why we must avoid grapefruit.
There’s an enzyme in your body called CYP3A4. This enzyme is

by David83 (Aug 6)

Hi All,
As someone who is just trying to get my head around all of this could someone explain a little bit about this table? It’s obvious that certain drugs react with the TKIs but what are the
Category: Drug-drug interactions

Replies: 13

Last updated: 6 August 2018
sandy craine on 30 March 2018

Category: About CML

Replies: 9

Last updated: 6 August 2018

UK CML Patient Day 2018
by Rick B (Aug 6)

Thank you.

by sandy craine (Aug 3)

Not to my knowledge - although I imagine a meeting like this would be more difficult to arrange in the US, it much larger than the UK.
The Specialist CML Clinicians in the UK are committed to

by Rick B (Aug 3)

Is there anything like this in the U.S.?

by David Fitz (Aug 2)

Registration is now open.
See our dedicated page on this event for up to date info
https://www.cmlsupport.org.uk/uk-cml-patient-conference-2018
Category: About CML

Replies: 9

Last updated: 6 August 2018
Tazdad on 2 August 2018

Category: Uncategorised

Replies: 8

Last updated: 4 August 2018

Extreme bone and joint pain
by AlastairC (Aug 4)

I'm know little about Tasigna I'm afraid, but given that you are still below 0,1% on PCR, and therefore in MMR, I'm surprised the dose has been put up that much. Perhaps someone who has a better

by Tazdad (Aug 3)

I was actually undetectable for well over 4 years. Maybe even 5. Then numbers went to .009 for about 6 months. I jumped to .024 and then increased to 200mg per day. I wanted to stop tkinda all

by AlastairC (Aug 3)

Tazdad, what happened to your PCR results to make you and your consultant decide to increase back to 200mg/day, from 200mg/week. The fact that you have had to do that makes any dose reduction plan

by alexmcpee (Aug 3)

I don’t know how long you’ve been at 0.009 but if held for 2 years I believe you can try stopping treatment altogether.
I may have gotten that wrong though. I am a newbie cmler also on Nilotinib
Category: Uncategorised

Replies: 8

Last updated: 4 August 2018
Nimbus2 on 2 August 2018

Category: Uncategorised

Replies: 2

Last updated: 4 August 2018

Urinary flow
by Nimbus2 (Aug 4)

Thank you, Romo.
I think that I will discuss with the consultant. Perhaps, it is the interaction of the various drugs coming into play. Regards, Stephen

by Romo (Aug 4)

I had the opposite situation.
My flow was robust until after TKI.
That’s when it became restricted.
My Primary Care Physician who works with
my oncologist as they are in the same network

by Nimbus2 (Aug 2)

I wonder whether any gentlemen posters here have experienced an improvement in otherwise compromised urinary flow through taking either Imatinib or Allopurinol? I do take Tamsulosin and Oxybutynin.
Category: Uncategorised

Replies: 2

Last updated: 4 August 2018
Nimbus2 on 31 July 2018

Category: Uncategorised

Replies: 12

Last updated: 3 August 2018

Bone marrow aspirate and trephine biospy
by DawnD (Aug 3)

Thank you Louise, will look into that card today!!

by LouiseS (Aug 3)

Hi Dawn
Glad the biopsy is over. One less thing to worry about :)
my husband started as well on Sprycel ( dasatinib). He pays nothing right now anyway because Norvatis the drug manufacturer

by DawnD (Aug 3)

So I had the bone marrow test done today at University of Miami. I was surprised when I opted for mild sedation that they had to use a scan prior to the doctor doing the test. Oh boy more radiation

by Felix (Jul 31)

Hi Dawn, I had my first test while I was in hospital the day after diagnosis. I had a local anaesthetic.The only advice I would give you is take someone in with you to hold your hand ,keep still but
Category: Uncategorised

Replies: 12

Last updated: 3 August 2018