You are here

Forum

johnw1001 on 15 February 2022

Category: Uncategorised

Replies: 14

Last updated: 24 May 2022

Update on Covid vaccinations for immuno suppressed
by Richard42 (May 24)

So a brief update after my tel con with my consultant yesterday, about 5th dose for me. In short - I can wait until around 6 months from dose 4 but recommended to have it (I suspect all over 50s

by Richard42 (May 5)

Yesterday I received the results of my latest antibody test (measuring spike protein antibodies - these are produced by both the vaccine and infection with COVID). Interestingly, they are 3.5

by johnw1001 (May 5)

Yes, I saw my specialist a few days ago and he said that recently the advice from JCVI and the Green Book became very specific and that those deemed immuno suppressed should have the 5th one as soon

by Patch (May 5)

Hi All,
Thank you all for all the updates
Its very reassuring that some of us have contacted Covid-19 and have survived... as pointed out Covid-19 is still around.
I've also received
Category: Uncategorised

Replies: 14

Last updated: 24 May 2022
Kes on 18 May 2022

Category: Other conditions

Replies: 10

Last updated: 23 May 2022

Fatigue and the future
by Kes (May 23)

Thank you for the advice, it's good that yours has reduced down. I've already reduced my hours as much as I could, but I'm still struggling with the work. I have got a good therapist though which is

by Kes (May 23)

It's comforting to know the first month's are the worst, the stress is bad too so I know that's probably part of it. I'm sorry you've been experiencing the side effects too, although it's good that

by Kes (May 23)

It's comforting to know the first month's are the worst, the stress is bad too so I know that's probably part of it. I'm sorry you've been experiencing the side effects too, although it's good that

by Kes (May 23)

It's comforting to know the first month's are the worst, the stress is bad too so I know that's probably part of it. I'm sorry you've been experiencing the side effects too, although it's good that
Category: Other conditions

Replies: 10

Last updated: 23 May 2022
Sherley on 6 May 2022

Category: Children & young people

Replies: 4

Last updated: 21 May 2022

Could I be resistant to sprycel
by Sherley (May 21)

Thank you for responding! I certainly will wait for my next appt. I need to have a talk with my oncologist to lower my dose. It just totally drains me every day.

by kat73 (May 20)

Yes, wait and retest, watch for a trend. Also, don't get too upset over the biopsy thing - a lot of us never had a bone marrow test done at diagnosis. There are other factors they

by Sherley (May 6)

Thank you for replying. That makes sense to wait another 3 months in case of error. Also I’ve had three doctors in the past year Bc they moved and one of them from last year

by ColoradoGuy (May 6)

First I would say that it seems incredible that they did not do a biopsy when you were first diagnosed. Second it is probably a good idea to wait 3 months to confirm that it is really rising
Category: Children & young people

Replies: 4

Last updated: 21 May 2022
Kamil on 18 May 2022

Category: Food & fitness

Replies: 6

Last updated: 21 May 2022

Vitamin D and other supplements
by Felix (May 21)

Hi, try Nutravita for all your vitamins in the UK ,they do a good Curcumin.They are an amazing company to deal with ,great prices ,and occasional freebies .Open an account on their main site

by scuba (May 20)

Yes - Arms shoulders legs can do it, but back is best. And amount of time. Lying flat in the sun at the beach at noon in summer for about 20 minutes can provide plenty of vitamin D.

https://www.

by Kamil (May 20)

I have found this product which is 1000mg, the ingredients and values seems to be okay. Could you confirm if this is a good c3 product, its hard to find sabinsa c3 complex here in the UK,but this

by EvaH (May 20)

Scuba, extra question on vit d3 sans being outdoors: someone would need to have significant areas of skinnexposed to get vit d benefit of being outdoors, right?
Category: Food & fitness

Replies: 6

Last updated: 21 May 2022
Busaboy on 25 March 2022

Category: Children & young people

Replies: 4

Last updated: 20 May 2022

Something positive for those stressing
by kat73 (May 20)

John - I didn't get my "double zeroes to the right" until about year 8. So, hang in there!

by JohnFromChicago (May 19)

Wow pretty similar to me! Also diagnosed 6 years ago, over the last year my PCR had become extra “bouncy”. I was nearly always .02-..04 for years prior then suddenly now I get results as

by annie63 (Mar 29)

Hi Busaboy, congratulations!
I hope anyone newly diagnosed with concern about those initial side effects reads your comment. It’s all such an unexpected learning curve. I initially

by sandy craine (Mar 26)

I hope you are allowing yourself to celebrate now! Thanks for your story, I am sure it will be helpful for others.
Sandy
Category: Children & young people

Replies: 4

Last updated: 20 May 2022
MJP on 12 May 2022

Category: Other conditions

Replies: 2

Last updated: 18 May 2022

TKI Withdrawal Syndrome
by EvaH (May 18)

I've noticed aches from earlier this year, maybe from end feb, having started tfr in November 2021.
Feels like the first signs of flu but mostly in the joints of the upper body and torso, my legs

by David Fitz (May 15)

That sounds really difficult. I spoke to a CML specialist in the UK about this at a conference, and he said that he only ever had one patient who went back on their TKI to alleviate the withdrawal

by MJP (May 12)

I ceased taking Sprycel on December 6, 2021 - giving treatment free remission a shot. I had taken it since first diagnosed and treated - May, 2018. I started on 100mg and moved to 70
Category: Other conditions

Replies: 2

Last updated: 18 May 2022
EvaH on 9 May 2022

Category: Blood tests

Replies: 6

Last updated: 15 May 2022

Back in TFR - happy days!
by Sav_5 (May 15)

Great news EvaH!!

by Sherley (May 10)

That’s great news!

by Sunny (May 9)

Lovely news EvaH. With so much bad news nowadays, nice to hear good news for a change.
All the best,
pigeon.

by Buzzm1 (May 9)

Happy for you Eva!
Buzz
Category: Blood tests

Replies: 6

Last updated: 15 May 2022
David Fitz on 15 May 2022

Category: Uncategorised

Replies: 0

Last updated: 15 May 2022

“My CML” app - feedback needed
by David Fitz (May 15)

Your help needed!
Hopefully lots of you are now using the “My CML” app, and have found it useful. We are now looking to get some formal and structured patient feedback, which will help
Category: Uncategorised

Replies: 0

Last updated: 15 May 2022
sb22 on 1 March 2021

Category: Side effects

Replies: 13

Last updated: 15 May 2022

stroke and nilotinib
by ColoradoGuy (May 15)

Did you have any symptoms? I had a couple of episodes last year of what I would describe as sudden vertigo. It did not last but a few seconds but I wonder what caused it. I was dehydrated and

by ColoradoGuy (May 15)

Did you have any symptoms? I had a couple of episodes last year of what I would describe as sudden vertigo. It did not last but a few seconds but I wonder what caused it. I was dehydrated and

by sb22 (May 14)

I am 19 years living with CML on my 4th set of medication

The tki that's in nilotinib can cause strokes my oncologist didn't flag this up even after the 2nd stroke I was on the meds for

by Sherley (May 14)

Wow. That’s really scary. My doctor last year wanted to put me on that but I refused. I’m currently on sprycel. But could be possibly resistant. I hope that
Category: Side effects

Replies: 13

Last updated: 15 May 2022
MJP on 12 May 2022

Category: Other conditions

Replies: 0

Last updated: 12 May 2022

TKI Withdrawal Syndrome
by MJP (May 12)

I ceased taking Sprycel on December 6, 2021 - giving treatment free remission a shot. I had taken it since first diagnosed and treated - May, 2018. I started on 100mg and moved to 70
Category: Other conditions

Replies: 0

Last updated: 12 May 2022
johnw1001 on 5 May 2022

Category: Blood tests

Replies: 7

Last updated: 9 May 2022

Lymphopenia
by scuba (May 9)

Conversion factor: 1 ng/ml = 2.5 nmol/L
60 - 80 ng/ml = 150 nmol/l - 200 nmol/l

by sandy craine (May 9)

Just to remind you that in the UK (and other EU countries) D3 is measured in nmol/L rather than ng/ml so you would need to convert your test result if you are following US based research/

by johnw1001 (May 6)

Chrissie,
I would not expect a GP to have in depth knowledge of how Vit D impacts on the immune system and nor would I expect them to understand the mechanisms of CML and how tkis themselves may as

by chrissie (May 6)

A question - why are my GP and haem both happy with my current Vit D levels at 53. I have been taking 1400IUs daily for a couple of years after my levels were " low". I shall continue on
Category: Blood tests

Replies: 7

Last updated: 9 May 2022
Helen on 7 May 2022

Category: Uncategorised

Replies: 1

Last updated: 9 May 2022

Covid Treatments for CML Patients
by sandy craine (May 9)

Hi Helen,
I think that after 3 or 4 days of symptomatic Cvid infection you should be able to assess whether it is going to be self-manageable or a more serious infection. I recently had Covid (

by Helen (May 7)

Have just tested positive for Covid Saturday morning and NHS have offered me an intravenous antiviral treatment to reduce risk of serious illness. Apparently the tablet antiviral can cause
Category: Uncategorised

Replies: 1

Last updated: 9 May 2022
Buzzm1 on 5 May 2022

Category: Uncategorised

Replies: 2

Last updated: 7 May 2022

Tasigna/Nilotinib U.S. patent expiration
by Buzzm1 (May 7)

In 2001, Gleevec was introduced into the U.S. market at a price of $26,000/year. By February, 2016 when the Imatinib generic was introduced, Gleevec was over $140,000/year.
In a confidential

by johnw1001 (May 7)

When the Glivec patent expired Novartis created their own generic of imatinib under the Sandoz label-Sandoz being the pharma company some decades ago that merged with Ceba-Geigy to form

by Buzzm1 (May 5)

Finally received a response from Novartis. Looked but couldn't find the original thread on the issue.
Dear Mr xxxxxx,
Thank you for your interest in Novartis Pharmaceuticals Corporation.
Category: Uncategorised

Replies: 2

Last updated: 7 May 2022
Kamil on 16 April 2022

Category: About CML

Replies: 8

Last updated: 4 May 2022

Newly diagnosed- Some questions
by David Fitz (May 4)

He was at Kings immediately prior to Guy’s. Every patient of his I have talked to speaks very highly of him, and in the few dealings I’ve had with him I have also found him to be an

by Kamil (Apr 28)

Yup, his our consultant very glad we have him. Pretty sure he came from Hammersmith :)

by David Fitz (Apr 28)

Dr Hugues de Lavallade is at Guys & St Thomas’ these days, so I would say pretty well equipped really.

by EvaH (Apr 27)

Her blood parameters might be all over the place for the next couple of months, don't worry too much about them.
Immediately after diagnosis and treatment, my WBC went the right way but my platelet
Category: About CML

Replies: 8

Last updated: 4 May 2022
Reilly9108 on 1 May 2022

Category: Uncategorised

Replies: 2

Last updated: 4 May 2022

Sprycel
by Sherley (May 4)

I do. Pretty much everyday.

by An (May 3)

My husband had bad knee pain ,drink lots of water and don't sit in one position for a long time.

by Reilly9108 (May 1)

Anyone using Sprycel have achy legs?
Category: Uncategorised

Replies: 2

Last updated: 4 May 2022
mamodei on 15 March 2022

Category: Side effects

Replies: 5

Last updated: 4 May 2022

Muscle pain on Sprycel?
by Sherley (May 4)

Hi. I have muscle pain all the time in one leg. I will definitely try the magnesium too.

by mamodei (May 3)

A combination of drinking more, and using magnesium oil when needed, has helped get this muscle pain under control. I take magnesium orally as well.

by sandy craine (Mar 16)

Hi Maria,
You may be suffering from myofascial pain syndrome... see here
I have recently suffered very similar issues with muscle and joint pain. I have found several things that have helped:

by mamodei (Mar 16)

Thank you. I do think I've been drinking less water so will make sure I'm remembering to drink more. I have magnesium oil which I've used for cramping in the past. I
Category: Side effects

Replies: 5

Last updated: 4 May 2022
Sherley on 1 May 2022

Category: Treating CML

Replies: 2

Last updated: 4 May 2022

Skin rash with blisters and blurry vision
by Sherley (May 4)

Hi Mamodol. Thanks for responding. I’ve tried several drops with no improvement. Also did you apply a cream to the rash to feel better? I saw my my oncologist

by mamodei (May 3)

I am much more susceptible to any skin infections on Sprycel. I did have some blurry vision, but it was dry eye. I'm not sure if the dry eye was caused by the TKI directly, occurred

by Sherley (May 1)

Hi, it’s been awhile since I’ve posted. I was wondering if anyone has experienced blisters and severe itching between toes. I’ve had this going on
Category: Treating CML

Replies: 2

Last updated: 4 May 2022
scuba on 25 March 2022

Category: Uncategorised

Replies: 14

Last updated: 4 May 2022

Treatment Free Remission (TFR) update:
by kali (May 4)

So happy for you Scuba! The information you share is so valuable and helpful. Thank you and best wishes for continued TFR.

by Sherley (May 1)

This is really great news!!! Congratulations on your TFR.

by MJP (Apr 25)

Congratulations!

by onekayaker (Apr 21)

Awesome Suba.....you are an inspiration to us all and such a big positive force that gives strength to those in need.
Your knowledge helped me many times and many others.

Thank you
Category: Uncategorised

Replies: 14

Last updated: 4 May 2022
SageH on 2 May 2022

Category: Drug-drug interactions

Replies: 4

Last updated: 3 May 2022

Sprycel Dose under 50 mg?
by mamodei (May 3)

I take 20 mg of Sprycel. I had to lobby hard for a dose reduction. I've been on 20 for 2 years now. I've continued to make downward progress on my BCR/ABL, though progress

by scuba (May 2)

My doctor prescribed 20 mg in response to my severe myelosuppression which occurred at a higher starting dose. He is an expert in the field and one of the top researchers in the world who helped

by Felix (May 2)

Hi Sage ,My Doc was completely against reducing my dose to 20 mg ,I just insisted ,it's your body and if this decreases your side effects and makes your life better then just tell your doctor

by David Fitz (May 2)

I take 20mg daily.
I don’t know of any studies going below 50mg, but studies aren’t the be all and end all. There are lots of stop-studies, so it stands to reason a small dose is going
Category: Drug-drug interactions

Replies: 4

Last updated: 3 May 2022
Thomaskk on 1 May 2022

Category: Side effects

Replies: 0

Last updated: 1 May 2022

Microscopic Hematuria
by Thomaskk (May 1)

Hi

On Gleevec for 8 years.
Last week Urine analysis detected 3-5 RBC in the sample. No signs of UTI. (Bacteria)
I have been experiencing excessive thirst, burning
Category: Side effects

Replies: 0

Last updated: 1 May 2022