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kali on 7 January 2019

Category: Uncategorised

Replies: 1

Last updated: 7 January 2019

Forum
by David Fitz (Jan 7)

Hi Kali,
I'm really pleased you find it useful and easy to use. We try to make everything as accessible as possible.
We will be making some upgrades to the site soon, so if you (or anyone

by kali (Jan 7)

I just wanted to say I am appreciative of how well this forum works. It is easy to navigate with topics and follow the threads. The information that is posted on the home page with articles and
Category: Uncategorised

Replies: 1

Last updated: 7 January 2019
alexmcpee on 30 December 2018

Category: Uncategorised

Replies: 21

Last updated: 6 January 2019

CML - Meetup
by martina (Jan 6)

Hi Joanne, it would be lovely to meet up with you and Liz ( if she can make it) around the end of Jan. I work every day until 3pm so the earliest I could make it would be 4pm I'm not sure how those

by alexmcpee (Jan 2)

You are most welcome guys and if you are all from the same area and you meet-up well my job is done :-)
I am getting lots of lovely personal emails and the subject of meeting up defo seems like

by Joanne. (Jan 2)

Hi again Martina.

That is such a coincidence that three of us ladies are from Sligo. Our consultant is obviously a fan of Nilotinib also as we are all on it!

I live near the Mayo border

by fiona vaughan (Jan 2)

Here is a letter I received from Hammersmith Hospital today. I will be going and thought some of you may like to attend too so here is the information
I have attached details of the next meeting, it
Category: Uncategorised

Replies: 21

Last updated: 6 January 2019
BrittBratt95 on 4 January 2019

Category: Children & young people

Replies: 4

Last updated: 6 January 2019

Early cml detection?
by David83 (Jan 6)

Hi Brittbratt,
You’re post caught my eye as you have similarities and also differences to my particular story and I hope I can help you a little bit with your questions.
Firstly I had never

by BrittBratt95 (Jan 6)

Thank you both so much for your responses. The e14a2 type of cml bit really opened my eyes I had no idea there were different types. I thought it was only the Ph negative or positive groups.
I will

by Evelinka89 (Jan 5)

Hi, it is hard to say how early it was cought. I do not know your exact results, but it was probably chronic phase, but no one can say how long the disease has been there since discovered. Yes,

by Felix (Jan 4)

Hello BrittBratt, Where are you being treated as your Haematologist sounds as useless as mine, that's why I am waiting to see a new consultant who just deals with CML.I have never been told
Category: Children & young people

Replies: 4

Last updated: 6 January 2019
Ray Sell on 1 December 2018

Category: Uncategorised

Replies: 21

Last updated: 5 January 2019

BCR-ABL1
by Tbrand (Jan 5)

I have been cutting a 400mg at the score line for a year now because I’m on 600mg. I contacted my pharmacy to get their take on it. I have read about the contents coming into contact with the

by Ray Sell (Jan 5)

Good to hear of someone cutting/breaking these in half that's been doing it for years. I've read both ways on internet.
Thank you for your reply Ray

by Ray Sell (Jan 5)

Scuba thank you. FYI, I'm taking magnesium, k and d as you suggested. I'm sleeping much better. The VA system is broken. I've went outside the system to another

by RC Kirk (Jan 5)

No need to cut, just break it at the score line in the middle. I've been doing it for years, not a problem.
Category: Uncategorised

Replies: 21

Last updated: 5 January 2019
Dustylloyd on 5 January 2019

Category: Getting help

Replies: 0

Last updated: 5 January 2019

Taking nilotinib
by Dustylloyd (Jan 5)

I work regular nights and take my medication (nilotinib)at 4am and 4pm, as for my energy levels at 61 I feel even if I didn’t have Cml you will slow down, but after 4years I am eternally
Category: Getting help

Replies: 0

Last updated: 5 January 2019
David on 18 December 2018

Category: Uncategorised

Replies: 8

Last updated: 3 January 2019

National Shortage of Imatinib?
by blueyes74 (Jan 3)

If anybody is running low i have 200 x100mg of generic Imatinib I don't need. I stopped taking them last year as i'm going for TFR.

by r06ue1 (Dec 26)

It is never a supply or shortage problem, it is always a money problem.

It costs a little over $100 US to produce an entire years supply of the medicine. The medicine can be

by chrissie (Dec 21)

Hi David
I had a H@H delivery of imatinib 100mgs yesterday evening and they sent me enough for 10 days at 300mgs per say. I had phoned them earlier, after seeing your post and was assured I would be

by David (Dec 19)

Many thanks for all your replies.
The problem may be linked to the possibility of a no deal Brexit, see here: https://www.bbc.co.uk/news/health-46597425
Category: Uncategorised

Replies: 8

Last updated: 3 January 2019
Justine on 29 December 2018

Category: Uncategorised

Replies: 10

Last updated: 2 January 2019

Achieved MMR after 21 months
by Vijay Kumar Verma (Jan 2)

Cograts Justin, i'm 1.016@18 months.dose increse from 400 to 600 mg imatinib

by Gitel (Dec 30)

Thank you, and everyone, for posting that being a turtle is just another pattern of living with CML. It was such a relief to read these posts. One forgets that being in a minority is OK. I

by Justine (Dec 30)

Denise my numbers went down slowly and then hovered around 1% for a while. It did seem to go up once or twice but we have had to switch labs a few times, and doc said it could be lab variations. The

by MartinZA (Dec 30)

Congratulations Justine! I'm so glad you got there in the end and can sympathise (it took me 24 months on 100mg dasatinib).
Just an extra bit of hope: A year on from then and I have
Category: Uncategorised

Replies: 10

Last updated: 2 January 2019
Vijay Kumar Verma on 29 December 2018

Category: Side effects

Replies: 2

Last updated: 2 January 2019

Sore gums
by Vijay Kumar Verma (Jan 2)

Hi Greg,
I'm from India,Delhi.vitamins b complex is the answer for sore gums.probiotic may be helpful for diarrhea.

Best wishes

Vijay

by gtboat (Dec 30)

Hi Vijay.
Are you living in Burlington, Ma?
I started the Gleevec 13 days ago and had my firs gum bleed yesterday. A touch of diarrhea this morning. These are my first sign of any side effects

by Vijay Kumar Verma (Dec 29)

Imatinib dose increse from 400 to 600 mg,from 24th dec .sore gums from yesterday.
Category: Side effects

Replies: 2

Last updated: 2 January 2019
Tidal-Life on 16 November 2018

Category: Treating CML

Replies: 7

Last updated: 2 January 2019

I'm unresponsive - 3 TKIs failed, 2 left to try
by JS001 (Jan 2)

Hi,
I’m in a similar situation having failed my third line therapy due to intolerance, although my remaining 2 TKIs are Nilotinib and Ponatinib.
Since you have no mutations, I would try

by onekayaker (Dec 30)

I failed/rejected dasat but was started on bosutinib gradually...100mg 2 weeks, 200mg 2 weeks, 300mg and staying on 300 since response was good according to reports. I did not have the

by RC Kirk (Dec 29)

Just curious, what was your experience with the trial of Asciminib?

by cmljax (Dec 29)

What breakpoint(s)/rearrangement(s)/ were discovered in any of your bone marrow biopsies? The typical breakpoints are either e13a2 P210 or e14a2 P210, but some CML patients have atypical BCR-ABL
Category: Treating CML

Replies: 7

Last updated: 2 January 2019
viksaparli on 17 December 2018

Category: Organising your life

Replies: 3

Last updated: 2 January 2019

Anemia after 12 month on Imatinib
by David Fitz (Jan 2)

I am so sorry to hear this. That is really terrible and you are in my thoughts.
I hope you are able to get some answers as to why this tragedy happened.
David.

by viksaparli (Jan 2)

She died on 26 dec. 2018 just after blood transfusion due to low hb 2.29hb, she was symptoms of hard breath due to low hemoglobin, After one unit blood transfusion just she was urinate only blood

by AF (Dec 17)

Some times there are secondary conditions that are developed after CML such Aplastic Anemia and MDS. She probably needs to be checked for both of these with another bone marrow test or sometimes

by viksaparli (Dec 17)

My relative female age 35 year diagnosed on 16 Oct 2017. Her wbc was 79000 and splenomegaly up to 15 m.m., after total diagnosis she treated to imatinib 400 per day up to 6 month and after one day
Category: Organising your life

Replies: 3

Last updated: 2 January 2019
Jason Graves on 24 December 2018

Category: Uncategorised

Replies: 4

Last updated: 29 December 2018

Low counts
by RC Kirk (Dec 29)

Here are the links back to his previous posts:
https://www.cmlsupport.org.uk/thread/12527/my-wife-was-recently-diagnose...
https://www.cmlsupport.org.uk/thread/12563/bone-marrow-transplant
https://

by scuba (Dec 29)

Jason,
Need more information:
1. What TKI, dose?
2. When diagnosed? current FISH and/or PCR level?
3. Blast cell count?
It's common early in treatment for myelosuppression to occur (low blood

by David Fitz (Dec 29)

Hi Jason,
Which TKI is she taking?
David

by RC Kirk (Dec 29)

Hi Jason,
If you can find some of Scuba's old posts, he discussed his problems with low counts when he started therapy and how his treatment plan evolved during that time.
I don't know if it
Category: Uncategorised

Replies: 4

Last updated: 29 December 2018
onekayaker on 27 December 2018

Category: Uncategorised

Replies: 1

Last updated: 29 December 2018

Eureka moment about hair loss
by David Fitz (Dec 29)

That is really interesting - I hope you have found the culprit. Please let us know how things turn out.
David.

by onekayaker (Dec 27)

I was diagnosed (confirmed) CML Aug 3 2018. About 3 months later and two TKI drugs later my hair started falling out. Sprycel which that is a side effect, I tossed that out the
Category: Uncategorised

Replies: 1

Last updated: 29 December 2018
Mick E on 23 December 2018

Category: Uncategorised

Replies: 9

Last updated: 27 December 2018

Imatinib and cardio training
by Mick E (Dec 27)

Hello Fiona
really sorry to hear you are going through an incredibly frustrating time, I really do feel your pain! I have gone from being able to do tempo runs at 8:30 min mile pace to

by fiona vaughan (Dec 27)

I was beginning to feel it was all in my head until I read this post. I have just started to return to running aiming to complete the 10km of the muscat half marathon next month and a half

by Mick E (Dec 26)

Been testing this theory about imatinib and decreases in exercise capacity again today. Went for for bike ride today prior to taking meds and there is definitely a very noticeable improvement

by Mick E (Dec 25)

I actually feel worse now on meds than prior to being diagnosed. Very disheartening ☹️
Category: Uncategorised

Replies: 9

Last updated: 27 December 2018
Stewart Bliss on 23 December 2018

Category: Drug-drug interactions

Replies: 1

Last updated: 27 December 2018

Shingles, (A Painful Xmas present from me to Myself).
by onekayaker (Dec 27)

My Ex had shingles on scalp and was advised not to fly with me on a trip. After it went away, was able to take the two shot preventative system. I was going to do this also but was told

by Stewart Bliss (Dec 23)

Hello My Name is Stewart Bliss,
I've posted on the forum page once before, when my ALT was raised, whilst I was taking Nilotinib..Hopefully that issue has been resolved by my Essex based
Category: Drug-drug interactions

Replies: 1

Last updated: 27 December 2018
gtboat on 25 December 2018

Category: Drug-food interactions

Replies: 3

Last updated: 27 December 2018

Things I should NOT take while taking Gleevec
by onekayaker (Dec 27)

Greg,
My cancer mentor started taking Gleevec the day it was approved. I do not take the same drug but I was curious about her side effects and foods she cannot eat now. She had to back

by M.ashcroft (Dec 26)

Hi Greg

I personally don't take any supplements as I feel it's best to get vitamins from diet but that's just my way of doing things the issue I have with supplements is not all of them are

by gtboat (Dec 25)

Also does anyone use Essiac Tea for CML??

by gtboat (Dec 25)

Has anyone found foods or vitamins or anything else that I shouldn't take while on Gleevec?? I have just started it 9 days ago. The only thing I have experienced is tiring easily.
Thanks,
Category: Drug-food interactions

Replies: 3

Last updated: 27 December 2018
Vijay Kumar Verma on 24 December 2018

Category: Uncategorised

Replies: 4

Last updated: 25 December 2018

PCR@18 MONTHS
by Vijay Kumar Verma (Dec 25)

From yesterday dose increase from 400 mg imatinib to 600 mg imatinib.after 15 days i'm going for IRMA TEST(imatinib resistant mutation analysis).

by Vijay Kumar Verma (Dec 25)

Yes,it is good to keep going down even it is slow

by scuba (Dec 24)

Gitel - Do you have any blast cells showing up in your blood count report? (expressed as percentage).
I assume you are reporting PCR percentage (5% at one year). Do you have a FISH report which

by Gitel (Dec 24)

I will join you in the turtle crawl. I am on 80 dasatinib, and at the end of 1 year have finally dropped to 5% . three months ago it was 14%, 3 months before that 24%.
I am hoping to drop
Category: Uncategorised

Replies: 4

Last updated: 25 December 2018
Kathyp on 23 December 2018

Category: Uncategorised

Replies: 2

Last updated: 23 December 2018

Claiming pip
by Kathyp (Dec 23)

Hi fatigue is my worst side effect,on my worst days I’m that exhausted I just stay in bed . I will let you know if I decided to claim x

by Felix (Dec 23)

HiKathy,I asked the same question but had no replies.I was wondering whether to give it a try as my sister in law who is a nurse thinks I fit the criteria .But reading around a bit I don't think

by Kathyp (Dec 23)

Hi guys , do any of you claim pip ? And if so was it straight forward ? X
thanks Kathy
Category: Uncategorised

Replies: 2

Last updated: 23 December 2018
Andrewkerry108. on 1 June 2016

Category: Side effects

Replies: 11

Last updated: 23 December 2018

Newbie to CML side effects.
by Kathyp (Dec 23)

Hi , did you look into claiming pip?

by Ben K (Jun 8)

Hi David,
Many thanks for your reply - and yes very mindful of the mental stress too. I have a weekly mindfulness meditation class, a counsellor I see each week and keep in close touch at work

by David Fitz (Jun 7)

Hi Ben,
If that works for you, then great! But be mindful of the mental as well as physical stress CML can put on you and if you have a great employer, they'd much prefer for you to tell them if

by Ben K (Jun 7)

Hi there - I am a newly diagnosed person too and have been on Tasigna for six weeks now. I have had very little time off work - just a couple of half days while I have hospital visits, a day
Category: Side effects

Replies: 11

Last updated: 23 December 2018
DawnD on 21 December 2018

Category: Blood tests

Replies: 2

Last updated: 23 December 2018

Advice needed again
by DawnD (Dec 23)

Hi David, I quess I didn’t explain myself well on the post. Yeah that was the problem, couldn’t tolerate activity and heart rate was too fast. I actually stopped the Spyrcel on my own

by David Fitz (Dec 23)

Forgetting about the numbers for a moment -how do you feel?
Perhaps you are just very sensitive to dasatinib and only need a small dose to manage things. That would be a pretty great outcome.

by DawnD (Dec 21)

Fish and PCR negative after 3 months of Sprycel. Started at 100Mg then down to 60 mg. On 12/4 WBC was 3, RBC 3.4, H:H 11.3/33.5, neutrophils,1380. 12/18 WBC down to 2.5,RBC 2.8, H/H 9.6 / 27.8,
Category: Blood tests

Replies: 2

Last updated: 23 December 2018
Tanya Cuffe on 22 December 2018

Category: Uncategorised

Replies: 11

Last updated: 23 December 2018

Help please!
by Tanya Cuffe (Dec 23)

You are right Gitel I am on my own through this.I will see my doctor ASAP and get referral to specialist.We don’t have university dental training places here so will follow the process I the

by Tanya Cuffe (Dec 23)

You are right Gitel I am on my own through this.I will see my doctor ASAP and get referral to specialist.We don’t have university dental training places here so will follow the process I the

by David Fitz (Dec 23)

I think that's wise advice Gitel.
A maxillofacial surgeon would be one to check out too. One of those took out my wisdom teeth (pre CML).
David.

by Gitel (Dec 23)

Tanya, you need a dental surgeon, not just a dentist. The dentists who refused to pull your tooth were wise. Did they refer you elsewhere? You have CML and an infection, in addition to the
Category: Uncategorised

Replies: 11

Last updated: 23 December 2018