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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
Kenny_K on 25 October 2016

Category: About CML

Replies: 3

Last updated: 19 December 2018

Transcript Type of CML
by Tbrand (Dec 19)

My P190 minor has not shown after month 2 of diagnoses and P210 major is now 0.000

by Job Guerra (Dec 18)

I was actually researching this very thing and came to the same conclusion about having both P210 and P190 transcripts and there being no difference in outcome as long as you have both and not P190

by nigel (Oct 26)

Hi Kenny, like you my cml has a break point of e14a2, my understanding is this is a very common break point. Have a look at the following
http://www.bloodjournal.org/content/114/11/2232

by Kenny_K (Oct 25)

Hello all,
I was diagnosed with CML 6 months ago and have been on Tasigna. I have a question on the transcript type of CML, which have me confused and worried all the time.
I read thru my RT-PCR
Category: About CML

Replies: 3

Last updated: 19 December 2018
Alaina on 15 December 2018

Category: Uncategorised

Replies: 9

Last updated: 18 December 2018

Rockstar Eyeballs
by David Fitz (Dec 18)

They sound great. If someone had difficulty finding them, carmellose sodium drops (0.5%, or 1%) are great for dry and tired eyes as well. They are very lubricating.
David.

by Alaina (Dec 18)

Kat! Thank you!! You're my angel!

by kat73 (Dec 17)

For red, bloodshot eyes, the only OTC eyedrops that have ever worked for me (and they really do!) are Lumify, by Bausch and Lomb. They use a very low amount of an ingredient for treating

by Alaina (Dec 17)

Thanks for responding, Ray! That is the pep talk I give myself when I get overwhelmed. If it weren't for medication, I would've had a very different story--benefits outweigh alternatives:)
Category: Uncategorised

Replies: 9

Last updated: 18 December 2018
JoeyD on 13 December 2018

Category: Treating CML

Replies: 4

Last updated: 13 December 2018

Side effects of nilotinib
by Mona Gard (Dec 13)

I was diagnosed in August of this year but my head itching started before I was diagnosed. After I started on gleevac it stopped. Me personally thinks it was a symptom of the cancer. A

by cmljax (Dec 13)

Hi - I've been on Nilotinib for nearly 27 months - started on 600 mg and had many, many side effects - one was itchy scalp caused by folliculitis, a common side effect of nilotinib. These were

by JoeyD (Dec 13)

Thank you so much for prompt reply. I have tried 2 shampoos but will give Tgel a go!

Had you been on Imatinib first or did you go straight on to Nilotinib? I had several side effects,

by CM-elon (Dec 13)

Hi there...I was diagnosed at about the same time and had a similar issue. Felt like tearing my hair out at times and it kept me awake at times in the night. I'm not sure if it was coincidence
Category: Treating CML

Replies: 4

Last updated: 13 December 2018
scuba on 7 December 2018

Category: Treating CML

Replies: 16

Last updated: 13 December 2018

Curcumin & Vitamin D - interesting research results (from ASH)
by scuba (Dec 13)

Sandy,
Here is the video documenting optimum levels of vitamin D I referred to in an earlier post.
https://youtu.be/z6M1ARtCi6c
The entire video is a great education on vitamin D overall. The spot

by scuba (Dec 13)

Sandy,
It is so sad to see people suffer needlessly when a simple solution like raising ones vitamin D level can do so much.
I have not had a flu or serious cold in more than six years since raising

by sandy craine (Dec 13)

Hi Scuba,
yes, I take your point about the general guidance for D3 levels but.... as I said.... personally I find I have responded better to a higher level which is why I currently like to keep

by scuba (Dec 12)

Sandy,
I would be cautious in raising vitamin D level much above 80 ng/ml. Research has shown (will post link when I find it again!) that ideal level for vitamin D in the blood for cancer and
Category: Treating CML

Replies: 16

Last updated: 13 December 2018
andycat on 24 November 2018

Category: Drug-drug interactions

Replies: 9

Last updated: 13 December 2018

cml drugs
by andycat (Dec 13)

HI, Thank you for your reply. You are lucky that you've had no nasty side affects on changing tabs. a fellow in our cml support group is the same but my friend Ann + I have had

by sandy craine (Dec 1)

We are all CML patients on this website---- including David. Some of us have had CML for a long time and wish to help others with CML, this is why this website exists.
If you are struggling

by RC Kirk (Nov 28)

It's good that your doc agreed with reducing the dose to 300mg. Hopefully it will alleviate your side effects. In my limited experience, imatinib has more benign side effects than

by AlastairC (Nov 27)

Hi. I was using the Wockhardt generic imatinib for the last year until I recently stopped taking them following the Destiny trial protocol. I had another generic before that, both through Alcura.
Category: Drug-drug interactions

Replies: 9

Last updated: 13 December 2018
Felix on 10 December 2018

Category: Getting help

Replies: 2

Last updated: 13 December 2018

Personal Independance Payment
by Felix (Dec 13)

Hi David ,thank you for taking the time to reply.Ihave had a quick look ,trying to get any benefit is difficult somebody always gives you a hard time so you just give up,but when you are ill it will

by David Fitz (Dec 12)

Hi Denise,
Sorry you haven’t got much of a response here - perhaps a topic people don’t have much experience with.
Have a look at the “CML UK” Facebook group. There are

by Felix (Dec 10)

Hi all ,Has anybody applied for this benefit and been successful. I am nearly 62 and 1 year since diagnosis,I don’t have a job now I just haven’t got the energy ,and with all the
Category: Getting help

Replies: 2

Last updated: 13 December 2018
Mona Gard on 10 December 2018

Category: Uncategorised

Replies: 2

Last updated: 13 December 2018

Stomach bloating
by Mona Gard (Dec 13)

Thanks John. I guess ill find out for sure at drs visit. I have a hernia and gallbladder issues for years so maybe meds interfering with that. Im only 4 months since dx so still pretty nervous on

by johnw1001 (Dec 11)

Hi there,
Gleevec or imatinib is well known for the GI-gastro intestinal issues associated with it and currently I am going through one of those episodes where it is necessary to be very careful

by Mona Gard (Dec 10)

Is this another side effect to gleevec? Stomach bloating? I have a Dr appt end of Dec with my family Dr but was wanting your thoughts on this. Thank you
Category: Uncategorised

Replies: 2

Last updated: 13 December 2018
fiona vaughan on 6 December 2018

Category: Uncategorised

Replies: 11

Last updated: 12 December 2018

frequency of follow up? What’s normal?
by alliswell (Dec 12)

@fiona
your concerns are well founded..
as RC KİRK mentioned , for the first two months monitoring should be more frequent. at least for CBC.
according to prescribing information of TASigna

by AF (Dec 7)

I am treated in Middle East and I have the same problem. I always have to try really hard with my doctor to get a pcr test. Most recently I have come off my medication and doctor still refuses to do

by David83 (Dec 6)

Hi Fiona,
Just a quick one to add from my experience and a scenario where I’ve been lucky I’ve been monitored closely.
It’s good to make sure you keep an eye on your complete blood

by David Fitz (Dec 6)

Fiona,
One thing worth knowing about PCR tests is that they are difficult to compare between different labs - even when you factor in the "international standard".
So ideally you
Category: Uncategorised

Replies: 11

Last updated: 12 December 2018