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SS86 on 2 February 2021

Category: Organising your life

Replies: 9

Last updated: 7 February 2021

Recently Diagnosed with CML
by SS86 (Feb 7)

Hi Lavinia,
Thanks for writing.
I wish you all the best for this battle and hope you come out victorious sooner than anticipated.
I read your story and it was very similar to ours.

by Lavinia (Feb 7)

Hi there,
I just wanted to chime in on the ‘trying to plan a family’ part because that is close to home. After being with my partner for 10 years we finally started trying to have a

by Deni H (Feb 4)

Thanks so much for replying.
I was being treated at Liverpool Clatterbridge Hospital but have been discharged to the care of Aintree Hospital in Liverpool. They currently have me on 400mg of

by sandy craine (Feb 4)

Hi Deni,
Where are you being treated and which TKI are you taking? I expect/hope your spleen will shrink back to normal size as you go on with your treatment.
re: pneumonia, I suggest also that you
Category: Organising your life

Replies: 9

Last updated: 7 February 2021
mil on 14 January 2021

Category: Uncategorised

Replies: 6

Last updated: 5 February 2021

Kidney stones and infection
by mil (Feb 5)

Hi guys, thank you all for your advices. I am feeling better now, I got an ultrasound 5 days ago and finally eliminate the kidney stones. The signs of infection had gone. The pain was terrible

by ColoradoGuy (Jan 30)

My wife has taken Stonebreaker pills and tea in the past as well as urisoidal or something to that effect. That seems to work wonders. I have witnessed how painful that can be so I hope yours

by Botagoz Abdrakhmanova (Jan 30)

Hi Mil, my mom has CML, last year she has suffered from fevers due to the kidney stones too. We tried pain killers, but fevers were just recurring again and again, so in the end after consultations

by mil (Jan 14)

Hi, I asked another doctor, he told me not to stop my medication even if i have fever or infection, only if a have too much nausea i can skip few doses, but he recommended me to continue with my
Category: Uncategorised

Replies: 6

Last updated: 5 February 2021
johnw1001 on 3 February 2021

Category: Food & fitness

Replies: 3

Last updated: 5 February 2021

UK government position on efficacy of Vitamin Dsupplements.
by alexmcpee (Feb 5)

Great article and I agree the guidance on dosage is ridiculous. 4000iu for me it is for the time being.

by Nimbus2 (Feb 4)

Here is the letter: Over 200 Scientists & Doctors Call For Increased Vitamin D Use To Combat COVID-19
https://vitamindforall.org/letter.html
I also take 4000 IU with K2.

by alexmcpee (Feb 4)

Hi John
I too received my supply and was disappointed that it was stating 400IU and not to exceed that dosage. Strangely every tub of vitaminD that I have found all say do not exceed dosage

by johnw1001 (Feb 3)

Hi All,
I have been looking at the advice leaflet sent out from Department of Health and Social Care with the first batch of Vitamin D (120 tabs at 400 iu each) to vulnerable patients.It says that
Category: Food & fitness

Replies: 3

Last updated: 5 February 2021
sandy craine on 3 February 2021

Category: Treating CML

Replies: 0

Last updated: 3 February 2021

Discontinuation of TKIS in CML: when and for whom?
by sandy craine (Feb 3)

A clear and thorough overview of the current data available from the clinical studies of TKI discontinuation and/or dose reduction.
Full article here
Sandy
This is quite an in-depth article so
Category: Treating CML

Replies: 0

Last updated: 3 February 2021
Mel on 27 January 2021

Category: Side effects

Replies: 12

Last updated: 3 February 2021

Stroke like symptoms on Gleevec
by Buzzm1 (Feb 3)

Mel, in response to your question: "The concern is I was Gleevec toxic."
TKIs are toxic medications and the more we take over the longterm the higher the probability of suffering

by Mel (Feb 2)

few weeks ago I started having problems swallowing as well as some pins and needles feeling in my left side. Quickly this progressed into not being able to move my entire left side. My left eye

by Mel (Feb 2)

I was do after a headache I couldn’t shake. My platelet count was in the 600s. I have been on Gleevec for the past year. The app drugs . Com as well as the FDA web site says it’s rare

by Mel (Feb 2)

I was do after a headache I couldn’t shake. My platelet count was in the 600s. I have been on Gleevec for the past year. The app drugs . Com as well as the FDA web site says it’s rare
Category: Side effects

Replies: 12

Last updated: 3 February 2021
Lavinia on 29 January 2021

Category: Side effects

Replies: 2

Last updated: 3 February 2021

Flu like symptoms on Sprycel/Dasatinib
by ThomasS (Feb 3)

I started on 100mg and i felt terrible too. I had to finally insist that we drop the dose to 50mg. My Dr didn't want to but she finally agreed to 70. Then 50 and side effects are much better and

by Felix (Jan 29)

Hi, when you come off the Allopurinol you should feel a bit better ,I did anyway caused terrible diahorea.When I started on Dasatinib I refused to start on 100 mg ,I had heard big burly 6 foot men

by Lavinia (Jan 29)

Hi all,
I started my CML treatment on Jan 13th with 100mg Desatinib. I posted previously asking about side effects and now that I’ve been on it for a few weeks they’ve definitely kicked
Category: Side effects

Replies: 2

Last updated: 3 February 2021
Tbrand on 16 January 2021

Category: Uncategorised

Replies: 1

Last updated: 2 February 2021

US Medicare
by Lisalater35 (Feb 2)

I hear the same thing about good RX in fact our insurance told us about it...

by Tbrand (Jan 16)

I haven’t seen a discussion on this for a while and looking at previous posts, this donut hole thing looks expensive for imatinib. I’m still a few years from Medicare, but doing some
Category: Uncategorised

Replies: 1

Last updated: 2 February 2021
Jmbnccyn on 29 January 2021

Category: Treating CML

Replies: 4

Last updated: 31 January 2021

Slow response imatinib..?
by EvaH (Jan 31)

Ive gone on to live in 3 countries on 2 continents since my diagnosis (including spain). I dont feel my CML restricts me in any way.
If you can, try to focus on what comes after, not on where you

by EvaH (Jan 31)

Every body is different, you are getting better and that's what matters.
I had a sub optimal response on 400mg imatanib at 3 months, but continued to have a very quick TMR time. And i had more than

by Dustylloyd (Jan 31)

Hi jay,
Alex is spot on in his reply to your concerns, I was on 200mg of Imatinib when first diagnosed 6 years ago, after 9 months my consultant informed me it had “failed” which I found

by alexmcpee (Jan 30)

Hi Jay
I completely understand your worries and concern. And like you in the early days I didn’t want to know anything bad and buried my head in the sand. At diagnosis I didn’t read any
Category: Treating CML

Replies: 4

Last updated: 31 January 2021
cmljax on 22 January 2021

Category: Side effects

Replies: 15

Last updated: 31 January 2021

Peripheral Neuropathy on Tasigna
by cmljax (Jan 31)

My oncologist is going to let me switch to 20 mg Sprycel. Here's hoping that that this resolves the neuropathy without causing any new side effect, e.g. pleural effusions - time will tell

by ColoradoGuy (Jan 28)

I have felt that sharp pain in my big toe now that I think of it. It does not las long and has happened about 3-4 times in the last 20 months. I also attribute it to Tasigna (600mg) but

by cmljax (Jan 27)

Shawn - I think we all react to these TKI's differently. There are some common side effects that many of us experience, but then there are the less common and even rare ones. Here

by ShawnJ (Jan 27)

I am not a veteran like some here with Sprycel but I have been on an aggressive dose reduction path since reaching MMR.
I have taken Sprycel for a little over a year now. I started at 100mg for 6
Category: Side effects

Replies: 15

Last updated: 31 January 2021
teddyb on 26 May 2020

Category: Drug-drug interactions

Replies: 8

Last updated: 30 January 2021

Influence of Proton Pump Inhibitors and H2-receptor Antagonists on the Efficacy and Safety of Dasatinib in Chronic Myeloid Leukemia Patients
by Nimbus2 (Jan 30)

Thank you, Sandy. I discussed this with a consultant pharmacist who works with CML patient. He was happy with 2 to 3 hours. I am try to make this a little longer. The increase dosage of lansoprazole

by sandy craine (Jan 29)

I would follow the advice from the pharmacist.... 2 hours between taking each drug.
Sandy

by Nimbus2 (Jan 27)

I have had quite a serious gastric pain issue recently coded as "Retrosternal pain (1829.) (New Episode)".
After consultations with haematologist and GP, I have been directed to increase

by teddyb (May 30)

So, after a Gastroscopy a few weeks ago, i get the results yesterday, and i seem to have some Gastritis.
Hospital says in letter, "Probable cause:TKI, no more treatment necessary"
Category: Drug-drug interactions

Replies: 8

Last updated: 30 January 2021
sandy craine on 20 December 2020

Category: Treating CML

Replies: 8

Last updated: 29 January 2021

Meet-the-expert Q&A Session- 27th Jan 2021
by sandy craine (Jan 29)

Details/timelines are included in the original post
You can send a question before the webinar via iCMLf email contact... see below.
Sandy
https://us02web.zoom.us/j/84715783748
Meeting-ID: 847

by mil (Jan 27)

Hi, what time is for USA? Thank you!

by sandy craine (Jan 24)

Hi Marion,
I think you need to put your question on a different thread. This thread is only to give the links for you to log in and join the ICMLF expert Q&A session 27th January. If you join

by ruel (Jan 23)

Hi marion,

Can i ask if you dont mind,what time you take your medicine? Is it with empty stomach or with foods??
Thnks
Category: Treating CML

Replies: 8

Last updated: 29 January 2021
daniellaw on 25 January 2021

Category: Uncategorised

Replies: 11

Last updated: 28 January 2021

Covid vaccination group
by daniellaw (Jan 28)

Just a quick update. I've now got an appointment for my vaccination on Saturday 6th Feb.

by alexmcpee (Jan 27)

Thats great peter! I believe by definition we should be in group 4 but I see how GPs could get confused if we've had a decent long term response to TKI. I am hoping I get the call anyday now too

by Dustylloyd (Jan 26)

Hi Daniella
just a quick update on vaccine situation in my area, yesterday I checked and could see confusion in categories, which,to a few of us from some of the departments we were in group 6 and

by daniellaw (Jan 26)

Thank you Richard. I've just a few minutes ago had confirmation from my GP that I was in the wrong category and they have now moved me to group 4 so hopefully I will be contacted in the next
Category: Uncategorised

Replies: 11

Last updated: 28 January 2021
EvaH on 11 January 2021

Category: Uncategorised

Replies: 13

Last updated: 28 January 2021

In praise of getting CML
by alexmcpee (Jan 28)

Hi Janet
Sorry to hear of your double diagnosis!
I can relate 100% to pulling on your mindfulness and meditation practice. I’ve been doing so myself since the day I got diagnosed which is nigh

by Janet Treble (Jan 27)

I was diagnosed with CML on Friday 13th November 2020, a date I will never forget especially as I was hospitalised on that day with Covid-19, a double whammy!
I am still in the early days/weeks/

by Richard42 (Jan 21)

I see many similarities between me, Eva, CM-elon and Alex. I was also 42 when diagnosed, with two young children. My initial concern was not seeing them leave school but that passed over time

by alexmcpee (Jan 19)

When I was diagnosed I almost told myself immediatley that CML was either going to be the worst or the best thing to have happened to me. (Weird but stick with me)... I told myself this is going to
Category: Uncategorised

Replies: 13

Last updated: 28 January 2021
vonnie on 26 January 2021

Category: Uncategorised

Replies: 2

Last updated: 28 January 2021

covid/vaccination
by David Fitz (Jan 28)

Hey Vonnie,
Similar to you, I felt a bit off colour for 24-48 hours but all quickly back to normal.
Bring on the second dose!
David.

by alexmcpee (Jan 27)

Yeah my dad had the same symptoms as you mention especially the headache the eve he got the jab.

by vonnie (Jan 26)

Hi posted yesterday how brill it was having the vaccination yesterday but i must be honest i did experience some side effects last night as they say you might on the information sheet they give you.
Category: Uncategorised

Replies: 2

Last updated: 28 January 2021
vonnie on 25 January 2021

Category: Uncategorised

Replies: 3

Last updated: 26 January 2021

covid/vaccination
by Richard42 (Jan 26)

Had mine on Friday. Sore/tender arm for a day or two - as with many vaccines - but nothing else and I didn’t expect more than that either, to be honest. Pfizer vaccine.

by Diane CW (Jan 26)

Hi Vonnie
Thank you for your reassuring post, I live in the south west and am expecting my call soon.
I’ve been feeling quite anxious about getting the jab and any possible effects afterwards

by alexmcpee (Jan 26)

Nice one Vonnie!
Still waiting to get the call down here in Kent (southeast). Should be anyday. I am so impressed with the speed of the rollout. We should see a change in the reported numbers come

by vonnie (Jan 25)

Hi everybody no problems this time just want to say i had my first covid jab today and want all to know incase there any doubters out there it was a dawdle no pain no side effects so please when you
Category: Uncategorised

Replies: 3

Last updated: 26 January 2021
sandy craine on 25 January 2021

Category: Other conditions

Replies: 1

Last updated: 26 January 2021

Vit D - new thread- Your Bones & Muscles Need Vitamin D
by Sunny (Jan 26)

Thank you Sandy for this informative article. Yes, Vit D RULES!

by sandy craine (Jan 25)

Given the number of posts about fitness and exercise issues and the ongoing effects TKI therapies I thought this article may be helpful. Optimal levels of Vit D3 is not only good for the immune
Category: Other conditions

Replies: 1

Last updated: 26 January 2021
ruel on 19 January 2021

Category: Uncategorised

Replies: 3

Last updated: 25 January 2021

Pleural Effusion
by Buzzm1 (Jan 25)

Thinking, especially considering your low PCR level, that your onc/hema would be amenable to lowering your Sprycel dose to 50mg, Lowering your dosage is key in dealing with pleural

by johnw1001 (Jan 20)

Hi
From your posting it would appear that your response to imatinib was poor and that you were then put directly on to ponatinib which is a last line drug and also which shows up some nasty vascular

by scuba (Jan 19)

https://www.sciencedirect.com/science/article/pii/S2152265016305687

by ruel (Jan 19)

Hi all,
I'm currently 54 yrs old. I initially took Imatinib then Ponatinib but both of them didn't work.
Right now I'm taking Sprycel (100mg) for about 2yrs now but my doctor
Category: Uncategorised

Replies: 3

Last updated: 25 January 2021
David787 on 21 January 2021

Category: Side effects

Replies: 11

Last updated: 25 January 2021

Side Effects?
by David787 (Jan 25)

Sorry Alastair, that last reply was for you!
David

by David787 (Jan 24)

Good to hear from you John, thanks for sharing your Imatinib and side effects journey.
It sounds as though you recovered really well. If I can get back into some decent walking I shall be well

by AlastairC (Jan 24)

Hi David
I started on 400 mg imatinib in 2007 aged 50. Early bone pain etc. died down after around 6 months, and fitness was pretty much back on track inside a year. I got back to playing inter club

by David787 (Jan 23)

Hello John
Thanks for your reply. It's very heartening to know that you have been taking Imatinib for 15 years, and are able to exercise so well. I certainly went through the muscle and bone
Category: Side effects

Replies: 11

Last updated: 25 January 2021
Lavinia on 14 January 2021

Category: Side effects

Replies: 4

Last updated: 25 January 2021

When do side effects typically kick in (Sprycel/Dasatinib)
by Lavinia (Jan 25)

Thanks all for your replies! I really appreciate it. I’ve started now for about 2 weeks and have definitely had a few side effects about 5 days in. I started getting really loud pounding heart

by alexmcpee (Jan 15)

Hi there,
As others have said take it as it comes. I had some side effects kick in within days and others that took months and unfortunatly years to rear their heads.
You're spot on with the

by MartinZA (Jan 15)

Hi there
David's advice is, as always, spot on! I had absolutely no side effects on Sprycel apart from thinning hair, which soon cleared up, and I loved being on the drug as I felt great.
Sadly,

by David Fitz (Jan 15)

It's totally possible you will have none, or only very mild ones! I think you are spot on - take it as it comes, and be very happy if you have no issues 🙂.
David.
Category: Side effects

Replies: 4

Last updated: 25 January 2021
Amit on 7 December 2020

Category: Uncategorised

Replies: 29

Last updated: 24 January 2021

COVID POSITIVE WITH CML
by sandy craine (Jan 24)

Nathan ... did you mean to say the you were diagnosed with CML rather than CMS? I have edited the part of your post that included a link to advertising 'flats in Greece' for obvious reasons

by mil (Jan 22)

Great Nathan! thank you for letting us know!

by Richard42 (Jan 22)

Following the first text at 12.03 yesterday afternoon, I was notified of an appointment today within about an hour. So, I had my vaccine this afternoon - the Pfizer one - all fine. Can't

by nathanavilla (Jan 22)

Hi everyone, I was diagnosed with CMS in 2015 and I've just vaccinated this morning with the Pfizer vaccine. So far never heard any special side effects from the other people who have CMS and I
Category: Uncategorised

Replies: 29

Last updated: 24 January 2021