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Heidi S on 18 July 2021

Category: Side effects

Replies: 16

Last updated: 22 July 2021

Breast pain?
by sandy craine (Jul 22)

Heidi,
'Normal' range depends on who is saying it - ie. from which reference. Do you have the actual figure or did your doctor tell you?
Sandy

by Buzzm1 (Jul 20)

Heidi, when your onc allows you to begin reducing your dosage, let us know what your new BCR-ABL readings are:
2021 (01) 0.12; (04) 0.09; (07) 0.32
2020
2019 find your prior readings

by EvaH (Jul 19)

Ovarian cysts come and go , i had em before cml and i have em now.
I also had beign lump on my brest removed, before cml. All of this happened between 35-40 for me. Its kinda just the age for it.

by Felix (Jul 19)

Hi Heidi,you sound like you are on a real downer ,upset and depressed please don't be .try to have a more positive mind set .You say you take a multivitamin that's no good ,there's not
Category: Side effects

Replies: 16

Last updated: 22 July 2021
EvaH on 16 July 2021

Category: Uncategorised

Replies: 3

Last updated: 22 July 2021

Covid vaccine :Going for Pfizer after Sinopharm
by EvaH (Jul 22)

No major = bone pain about 24hrs after injection which resolved overnight and arm tenderness at injection site for 2 days.

by EvaH (Jul 19)

Yes, i think it'll be bumpy ahead for the uk. Sky news had a surprisingly scientific comparative analysis of Netherlands vs Uk reopening. https://news.sky.com/story/covid-19-can-the-uk-avoid-

by sandy craine (Jul 18)

Hi Eva,
Delta (aka Johnson) Varient is rampant here in the UK too. Does not look good, especially after the current restriction (mask wearing/distancing etc) are being lifted here in UK on Monday. I

by EvaH (Jul 16)

Hi all
Due to rampant delta variant where i live, and that it's been 6 months since i had the sinopharm vaccine (chinese developed vaccine, not common in the west), I've been advised to get a Pzifer
Category: Uncategorised

Replies: 3

Last updated: 22 July 2021
kylelawkc on 3 May 2018

Category: Side effects

Replies: 4

Last updated: 21 July 2021

Nilotinib—Hair Loss
by Mls (Jul 21)

Just wanted to let you know what my doctor did …she would not let me go that low she strongly suggested that I go to 400 a day and she wants to see how my body works with that dosage. I

by Mls (Jul 21)

Hi there that’s great news to hear …I am currently at 600 mg they’ve reduced me to 400 mg per day I am hoping that my hair will start to grow at this point. It seems that it never

by drudesen (Sep 28)

This is very encouraging to hear. I just placed a call to my onc.
I am on 600mg of Tasignia and have been since I started in 04/18.
I want to go down to 150mg if possible!!! Slow reduction I know

by cmljax (May 3)

When I was on Tasigna 600 mg/day, my hair stopped growing for about 3 months. As I began to reduce dose ffirst to 450 then to 300 then to 150, my hair started growing again. So when you
Category: Side effects

Replies: 4

Last updated: 21 July 2021
JPD on 22 June 2021

Category: Treating CML

Replies: 18

Last updated: 20 July 2021

Dose reduction for everyone (MMR and lower)? DESTINY study.
by joflo (Jul 20)

Ah thanks for the update it was 10 yrs since I saw him...

by AlastairC (Jul 19)

I think Prof Clarke has retired from clinical practice.

by joflo (Jul 19)

Hi Buzz thanks so much for this yes 10 yrs is a long time and ur right given I’m not good at taking it these days they are probably using it as stick rather than carrot method to not

by joflo (Jul 19)

Hi there yes I know there’s a few others who just deal with pharmacist..not unusual nowadays probably a resource issue . I don’t mind just seeing the pharmacist as I was only ever with
Category: Treating CML

Replies: 18

Last updated: 20 July 2021
scuba on 19 July 2021

Category: Uncategorised

Replies: 1

Last updated: 20 July 2021

Adding fermented foods to diet improves inflammation markers
by johnw1001 (Jul 20)

Hi Scuba,
I am a convert to what you have related.Sauerkraut and kimchi are not only beneficial because they are fermented but also because they are cruciferous/brassicas or in other words

by scuba (Jul 19)

https://www.genengnews.com/immunology/multiomics-clinical-trial-compares...

Our ancestors ate off the land in the same way animals around us currently do. Our ancestral food was laden with
Category: Uncategorised

Replies: 1

Last updated: 20 July 2021
sandy craine on 19 July 2021

Category: Other conditions

Replies: 0

Last updated: 19 July 2021

Dr. John Campbell video - COVID-19: risk factors linked to post vaccination breakthrough infections
by sandy craine (Jul 19)

As always, worth watching Dr. John Campbell.....clear information regarding risk factors post Covid-vaccines.
Category: Other conditions

Replies: 0

Last updated: 19 July 2021
Sd on 14 May 2021

Category: Side effects

Replies: 8

Last updated: 19 July 2021

Imatinib and stomach issues
by Humberto (Jul 19)

Hello.
What works for me is to take imatinib in the middle of the bigger meal of the day. I mean, I start to eat. And in the middle, I take the pill, and then I continuous eating.
Cheers.

by Sd (Jun 23)

That is great news. My "feeling good" continues. I hope yours does also.

by AlastairC (Jun 23)

Your experience of halving the dose of imatinib was the same for me. I lost the cramps, much less oedema, nausea and flatulence, and hair thinning began to recover.

by EvaH (Jun 22)

As for diet: many red wines, any neat hard alcohol and/or big anmounts of red meat will almost guarantee me acid reflux at night (high pillows help)
Category: Side effects

Replies: 8

Last updated: 19 July 2021
JPD on 16 July 2021

Category: Blood tests

Replies: 1

Last updated: 18 July 2021

Dose reduction approved (yay!) Liver Panel anxiety (boo!)
by sandy craine (Jul 18)

Why are you giving yourself such a hard time? I would say you are probably very aware that you are overthinking your blood results. Focus all your 'worry energy' on the most important - and

by JPD (Jul 16)

First, the good news. We are gonna drop me down from 400mg of Tasigna per day to 300mg and retest after 3 months. My docs thought it totally reasonable (even though I had to ask for it
Category: Blood tests

Replies: 1

Last updated: 18 July 2021
Poppert on 10 July 2021

Category: Side effects

Replies: 2

Last updated: 16 July 2021

Tasigna stomach pain
by Poppert (Jul 16)

Thank you for your response. It resolved after a couple of days and I’m feeling quite good now.
I got a little anxious when I didn’t quite recognise my body. Only 3.5 years into

by sandy craine (Jul 12)

Yes, you are right, his is one of the side effects of TKI therapies in some people, which may well subside as your body adjusts to therapy. However, if it is distressing you try talking to your

by Poppert (Jul 10)

I started on Tasigna five days ago. After about three days I started having stomach pain. I read this can be a side effect.
Is it common to have this in the beginning? Can I expect it to go away?
Category: Side effects

Replies: 2

Last updated: 16 July 2021
Susanne2311 on 13 July 2021

Category: Uncategorised

Replies: 5

Last updated: 16 July 2021

Cml patient’s immunity
by Susanne2311 (Jul 16)

You are absolutely right EvaH. This disease definitely does not define him. It’s just that he informed about his condition to us just 2 weeks back and it was too much to digest for me and my

by EvaH (Jul 16)

53% at diagnosis would indicate he was diagnosed very early in the disease progression, normally is 100%>
53% to 8% in 3 month is indicative of log reduction. Ie Ideal path to MMR

by EvaH (Jul 16)

His immunity should be fairly normal.

At his stage, i was planning a trip backpacking in Sri Lanka and my doc ran an immune planel to ensure everything was fine and it was.
Are you worried or

by Susanne2311 (Jul 13)

My brother who is a CML patient has a bcr abl gene of 8% that has come down from 53% 3 months back when he was first diagnosed. His WBC count is normal and his spleen size is normal too. Which stage
Category: Uncategorised

Replies: 5

Last updated: 16 July 2021
Roza on 6 July 2021

Category: Blood tests

Replies: 6

Last updated: 16 July 2021

12 month BCR reading not as expected
by EvaH (Jul 16)

Ps there was no mutation, im still on 400mg imatanib, with time side effects diminished. Do a search on this forum for tips on managing them. Best of luck!

by EvaH (Jul 16)

I was checked for a mutation due to sub optimal results at 3 months. It seems to be a standard medical protocol when there's a blip in bcr/abl progession.
I agree the extra tests are from caution,

by Roza (Jul 8)

Many thanks, I think there is so much focus on the 12 month point from the time of diagnosis, it just makes it a bit more nerve-wracking than it probably should be. Really appreciate the support.

by ColoradoGuy (Jul 8)

I would wait to see if you have a trend before any switch. It may just be a plateau with a drop coming up. Alistair is right that 0.3% at 12 months is pretty good. I have seen my
Category: Blood tests

Replies: 6

Last updated: 16 July 2021
EvaH on 7 June 2021

Category: Uncategorised

Replies: 39

Last updated: 15 July 2021

Question for dose reduction/ TFR folk
by EvaH (Jul 15)

Thanks buzz, interesting and i didn't know it.

by Buzzm1 (Jul 14)

EvaH, Imatinib is known for moderating blood pressure. As I reduced my Gleevec dosage my blood pressure meds were eventually increased. Glad to hear that you have begun Imatinib dosage

by EvaH (Jul 14)

I started with alternating 200mg and 400mg last week.
Had my first eye bleed in ages today, is that a known dose reduction side effect?
It cleared up very quickly , which is a good sign, but i do

by Buzzm1 (Jun 20)

EvaH, alternating 400mg and half-tablet 200mg averages 300mg; many have done this without any problem.
Category: Uncategorised

Replies: 39

Last updated: 15 July 2021
KirstForsts on 12 July 2021

Category: Blood tests

Replies: 4

Last updated: 14 July 2021

Steroids to support bone marrow
by KirstForsts (Jul 14)

Thank you! I’m looking forward to these times passing!
Thank you again for taking the time to reply!
k 😊

by TimoD (Jul 14)

Hi!
In my case the growth factor injection is for increasing neutrophil count. I do not have much trouble with anemia, my concern is neutrophils
EPO aka erythropoetin is an active biological

by KirstForsts (Jul 13)

Hi! Thanks so much for taking time to send such a detailed reply. It’s really helpful!
It is likely my husband will restart TKI therapy next week given the amount of time he has now been off

by TimoD (Jul 13)

Hi!
My situation mirrors your husbands one exactly. I am also 7 months in and struggling with low platelets and low neutrophils. My anemia is mild though and hovering between 10 and 12.
Category: Blood tests

Replies: 4

Last updated: 14 July 2021
David on 6 July 2021

Category: Uncategorised

Replies: 13

Last updated: 13 July 2021

Coronavirus vaccine effectiveness in CML patients
by Ismo (Jul 13)

Hi Christine et al
I too had an antibody test with my latest bloods and was advised that I had produced antibodies but it was not clear a) what level was required to achieve maximum protection and b

by Christine R (Jul 10)

After reading this thread i started to worry that i may not have the full picture in respect of my immune response. I emailed my consultant who has advised that i had anti bodies and had some

by Christine R (Jul 8)

I also asked my consultant about the vaccine and i was told i could have an antibody test with my next set of bloods. The result showed there were anti bodies but there was a note with the results

by michelle (Jul 7)

Hi Alistair
Your reply has given me some needed reassurance. I will be continuing to observe the same measures as you.. I had just begun to feel a little better after the whole shielding
Category: Uncategorised

Replies: 13

Last updated: 13 July 2021
Dustylloyd on 13 July 2021

Category: Uncategorised

Replies: 0

Last updated: 13 July 2021

Lifting of restrictions.
by Dustylloyd (Jul 13)

Hi all,
just wondering about concerns after announcement confirming the lifting of the majority of restrictions concerning covid (uk) coming into force on the 19th July, I’ve raised the point
Category: Uncategorised

Replies: 0

Last updated: 13 July 2021
patriciakh on 11 July 2021

Category: Side effects

Replies: 5

Last updated: 13 July 2021

Skin reactions and Imatinib
by Felix (Jul 13)

Hi, o good you can get to Superdrug.I bought the Vitamin E intensive all over body cream it's in a big pot and the hydrating mist ,kept one of these in the fridge .Great to cool the rash down

by patriciakh (Jul 12)

Sandy, thank you for this. My consultant is not a specialist in CML and is very overworked at present. With telephone consultations it is obviously not as good as seeing the patient and

by patriciakh (Jul 12)

That is really helpful Denise, thank you. I shall buy some of the cream and spray from Superdrug. The itching has been awful, hopefully this should help. All the best. Paricia

by Felix (Jul 12)

Hi Patricia ,I too had a really bad very itch red bumpy rash on neck ,chest area and over my shoulders ,it used to drive me mad and was worse in hot weather .I didn't want to go the steroid
Category: Side effects

Replies: 5

Last updated: 13 July 2021
jb on 9 July 2021

Category: Blood tests

Replies: 4

Last updated: 10 July 2021

Anemia and lower leg fluid
by jb (Jul 10)

Thanks all!! That makes me feel better! Stay well everyone.
jb

by Krissi0913 (Jul 10)

Hi. I've been taking Sprycel for 31 days now and I have weekly blood tests. My hemoglobin and platelets were low last week, and are now back in the normal range. My WBC have been normal

by sandy craine (Jul 10)

Fluid retention in lower legs? This might be because you are not taking enough exercise, even while you are sitting you could try to keep your feet and legs in motion. Blood/fluid tends to pool at

by ColoradoGuy (Jul 9)

I did have fluid retention in lower legs prior to diagnosis. In fact, that is what made me go to the emergency room to figure out why that was happening. I have not read of any other
Category: Blood tests

Replies: 4

Last updated: 10 July 2021
scuba on 8 July 2021

Category: Uncategorised

Replies: 2

Last updated: 10 July 2021

Dasatinib and old age ...
by Krissi0913 (Jul 10)

Super interesting. Thanks for posting.

by Nimbus2 (Jul 9)

Post removed.

by scuba (Jul 8)

For those taking dasatinib (sprycel), the article below is interesting ...
Combining dasatinib with quercetin helps mice eliminate senescent cells (old age cells).

https://today.uconn.edu/2021/07/
Category: Uncategorised

Replies: 2

Last updated: 10 July 2021
EvaH on 4 July 2021

Category: Other conditions

Replies: 7

Last updated: 9 July 2021

Blood donation - not possible ?
by Nimbus2 (Jul 9)

Yes, it is health and safety. At 85 kg, I would be excluded. However, patients often lose weight prior to death. The University of Birmingham did not even respond to my letter. It is also necessary

by hannibellemo (Jul 8)

I was told cornea donation was acceptable. No?

by AlastairC (Jul 8)

David I guess this is a health & safety consideration for the medical students moving the body about. From some of the descriptions of friends who were medical students in the 1970s this

by David Fitz (Jul 8)

Wow! I had no idea there was a weight limit, I would have thought all shapes and sizes would be medically interesting, one way or another.
80kg is not a lot … I barely scrape into that and I
Category: Other conditions

Replies: 7

Last updated: 9 July 2021
SS86 on 6 July 2021

Category: Side effects

Replies: 2

Last updated: 9 July 2021

6 months with Dasatinib - Some queries & concerns
by SS86 (Jul 9)

Thank you :)

by An (Jul 8)

Hi ,
Even my husband's skin tone had become pale after dasatinib,it seems to be a common side effect

For fatigue drink lots of water, weirdly exercise helps,I don't know if it is due to

by SS86 (Jul 6)

Hi All,
My wife has recently completed 6 months on Dasatinib 100 mg after being diagnosed in December 2020. Would seek your valuable advise/inputs on the below concerns:
- greying of hair
Category: Side effects

Replies: 2

Last updated: 9 July 2021