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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
Rick B on 1 August 2018

Category: Uncategorised

Replies: 4

Last updated: 1 August 2018

Question about low blood counts
by Rick B (Aug 1)

Louise, thank you. Good counsel. I see my oncologist/hematologist again on Monday, preceded by my next blood test.

by LouiseS (Aug 1)

Rick my husband is just under a year diagnosed and I have questioned his doctor on every result that has been marked high or low. Coming here I realized that those highs and low ranges aren’t

by Rick B (Aug 1)

Kat, thank you. Very helpful and hopeful. Peace to you.

by kat73 (Aug 1)

Those are not scary bad and are very typical for where you are now. It can take months, even years, to come back to normal levels. Some of us will stay at low-normal or high-abnormal
Category: Uncategorised

Replies: 4

Last updated: 1 August 2018
Belladoo on 13 July 2018

Category: Treating CML

Replies: 5

Last updated: 1 August 2018

Blast crisis
by LouiseS (Aug 1)

Belladoo, I wanted to reach out and find out how your husband is doing . I have been thinking about you both and hoping you have had some better news since you last posted.
Best wishes Louise

by scuba (Jul 14)

They are learning a tremendous amount regarding T-cells (our immune defense mechanisms) and how T-cells are very much active against cancer all of the time - except when they are not. They are

by Belladoo (Jul 14)

Scuba, thank you so much for your comprehensive reply.
I am very pleased to report that hubby’s doctors must be on the ball with Vitamin D as they have got him on supplements as part of his

by LouiseS (Jul 14)

Belladoo I am so sorry to hear this. I hope you have family and friends close by to support you both.
I would also post on the community section of the lls.org website. Trey (and others )who
Category: Treating CML

Replies: 5

Last updated: 1 August 2018
chrissie on 1 August 2018

Category: Uncategorised

Replies: 1

Last updated: 1 August 2018

What is "undetectable"?
by scuba (Aug 1)

PCR values < 0.01% and "undetectable" are indistinguishable due to the precision of the testing equipment. In fact, qt-PCR testing precision falls off dramatically below 0.1%.
Any patient who

by chrissie (Aug 1)

Hi All
I have seen several posts on the various CML FB sites written by CML patients who are now " undetectable" and going treatment free. I am wondering how low their hospital labs go with the
Category: Uncategorised

Replies: 1

Last updated: 1 August 2018
DawnD on 27 July 2018

Category: About CML

Replies: 8

Last updated: 31 July 2018

Just diagnosed
by DawnD (Jul 31)

Thank you so much. Your support means a lot!!! This site has been very very helpful already. Thankful!

by chrissie (Jul 31)

Hi Dawn
I don't really have much to add except to say that we all remember what a terrifying and emotional roller coaster the first few months were. Any advice I would give is to write down all your

by DawnD (Jul 30)

Thanks for the insight on the Vitamins Louise. I will get that D level checked. Yes this site has been such an amazing support., just realizing I am not alone! Looking forward to starting the

by LouiseS (Jul 29)

Hi Dawn
Don’t worry too much about your appetite. It will bounce back I bet once you start to have more energy. And back to forgoing the extra clothing layers as well.
I really can’t
Category: About CML

Replies: 8

Last updated: 31 July 2018
chrissie on 18 July 2018

Category: Uncategorised

Replies: 4

Last updated: 31 July 2018

PCR results on IS or not on IS
by chrissie (Jul 31)

Hi Daphne
Sorry for the delay in replying - house full of visitors/family etc. Yes I am treated in Exeter. Sorry to hear that you are a late responder - some people tend to react more slowly I know

by Daphne Lynn (Jul 26)

Hello Chrissie
I was really interested in your post, especially as I seem to remember from when I originally posted last year following diagnosis in December 2016, that you are treated at the

by kat73 (Jul 18)

Chrissie - Thanks for being a human guinea pig for us all! It's really good for the doctors to hear from real, live patients about what really matters to us (like accurate and understandable

by David Fitz (Jul 18)

Chrissie,
There’s been a recent effort from the labs in the UK to get not he International Standard. I’m seem at Barts, and they got themselves on IS about a year ago. It’s not a trivial task ...
Category: Uncategorised

Replies: 4

Last updated: 31 July 2018
Victor Dax Jose on 12 August 2017

Category: Uncategorised

Replies: 32

Last updated: 30 July 2018

HI I'm Dax from the Philippines and was recently diagnosed with CML this year I just started taking Imatinib but its expired for 10 years
by David Fitz (Jul 30)

Forum Administrator Note:
While we completely understand that it can be difficult for some people to access the medication that they need, using this forum as a place to buy / sell or

by Ary Setijadi Prihatmanto (Jul 30)

Hi Levs,
I am interrested too. It is for my son with ALL with Phi+
Cheers,
Ary

by Philiptibbs (Jun 12)

I have 3 boxes of Tasigna 150mg capsules . Do you know anyone who would need them ?

by Victor Dax Jose (Jun 11)

Hi Debbie. Sorry for replying so late. The name of the seller in India is (removed) his number is +(removed) through WhatsApp. Just try asking how much plus shipping.
Category: Uncategorised

Replies: 32

Last updated: 30 July 2018