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Hannah Geddes on 24 June 2017

Category: Side effects

Replies: 7

Last updated: 17 August 2017

Headaches - Please help!
by EvaH (Aug 17)

Meditation really helped with my migraines and mine were mostly stress triggered. i suspect the TKI headaches are triggering stress migraines. Check out Dhamma Dipa in UK for introductory 10 day

by sandy craine (Jul 3)

Hannah,
I think if you feel you are not being listened to then you should follow your instinct and ask for a referral... maybe to Bristol and the clinician that Chris has recommended. As there are 5

by cdw5000 (Jul 2)

Hello Hannah,

I'm sorry to hear you're having a bad time on nilotinib. When I first started taking nilotinib I had the same symptoms you describe but they settled relatively quickly. You're

by Hannah Geddes (Jun 30)

Hi Sandy,

Thank you for your reply.
My headaches are very similar to Migraines. When I say I have a migraine often I class that as me being bed bound, unable to move without being sick
Category: Side effects

Replies: 7

Last updated: 17 August 2017
John Gilbert on 23 July 2017

Category: Treating CML

Replies: 2

Last updated: 17 August 2017

PCR 24% but cant get lower
by EvaH (Aug 17)

As a quick positive note, optimal response has an impact on your ability to eventually come off TKIs but doesnt seem to effect long term remission.
However I agree a plateau at 24% might be worth

by sandy craine (Jul 29)

HI John,
Sorry for this late replay as I missed your post. I have a few questions:
1. Where are you being treated? Is it s regional CML expert centre or a District General Hospital?
2. Does your

by John Gilbert (Jul 23)

Ive been on Sprycel for 2 years. The first year I got down to 9% pcr levels and then my platelets started getting low. I did a bone marrow biopsy and I didn't have any mutations and no more blasts
Category: Treating CML

Replies: 2

Last updated: 17 August 2017
Lady Doc on 10 July 2017

Category: Side effects

Replies: 7

Last updated: 17 August 2017

Need some peer support.
by EvaH (Aug 17)

Dear Lady
So very sorry to hear about your troubles. I cannot offer much in the way of medical advice, I have CML and some close friends have fibro and chronic pain and I cant imagine dealing with

by johnw1001 (Jul 14)

Hello,
i read your post with interest as back in the 1980 s I was eventually diagnosed and treated for pulmonary sarcoidosis.Initially I was mis-diagnosed and then mis-treated with 3000mg of strong

by Harsh (Jul 11)

Hi,

Iam sorry for your suffering from pain. I was dx in nov 2016 and started on nilotinib .I had body pain for last 10weeks,but not showing any thing on x ray and scans.It started with left

by sandy craine (Jul 11)

Hi and welcome,
As you are in the US you could try contacting the National CML Society - they advise on all aspects of CML for patients in the US and also on how to connect with others in your area
Category: Side effects

Replies: 7

Last updated: 17 August 2017
Amit on 20 July 2017

Category: Uncategorised

Replies: 3

Last updated: 17 August 2017

Immune System
by EvaH (Aug 17)

Mine is great and I certainly like to put it to the test :D :D

by Amit (Jul 20)

Thx for the inputs David.

by David Fitz (Jul 20)

Amit,
It can depend on the individual. Some TKIs (to some people) can suppress their blood counts a bit. For example my white cell count is always quite low. Not dangerously low or anything, but

by Amit (Jul 20)

Dear All:
Just wanted to know how our immune system is in comparison with people who dont have CML ? Is it more vulnerable or same as anyone else ? Since our respective meds take care of our counts
Category: Uncategorised

Replies: 3

Last updated: 17 August 2017
Andy on 11 August 2017

Category: About CML

Replies: 4

Last updated: 17 August 2017

New to this FORUM
by EvaH (Aug 17)

for your other questions: Life can be pretty normal, however each patient response to treatment and the disease very differently. I'm certainly not living life wrapped up in cotton wool, and yes I

by EvaH (Aug 17)

I really think that stopping the TKI was a weird course of action. If the doctor advised you to do so, I would demand to understand why. If you decided this yourself please GO BACK ON THE MEDS.

by Ellie Regina Grey (Aug 13)

Hello Andy,
Personally, I share similar sentiment on meeting you and everyone here on this forum, while wishing that we could've made all our acquaintances under a much more pleasant circumstance.

by Justine (Aug 11)

Hi Andy,
At my diagnosis in April this year, my WBC was 280K. I too am on 400 Gleevec and as of a couple of weeks ago, my WBC was down to 2.6. It is interesting to me that your doctor suggested
Category: About CML

Replies: 4

Last updated: 17 August 2017
gordyboy on 13 August 2017

Category: Side effects

Replies: 0

Last updated: 13 August 2017

sprycel (dasatinib) side effects
by gordyboy (Aug 13)

have read that intolerance to some side effects are sometimes sorted by interruption of the treatment Be interested to hear if anyone has been in this position.
Regards
Category: Side effects

Replies: 0

Last updated: 13 August 2017
gordyboy on 2 August 2017

Category: Drug-drug interactions

Replies: 2

Last updated: 2 August 2017

imatinib/dasatinib/fluid retention/diarrohea/gout etc..
by gordyboy (Aug 2)

Hi Stuart - thanks for your reply seeing oncologist next Tuesday it will involve a blood test so I'll ask her.
Regards

by Stuart Johnston (Aug 2)

Hi Gordyboy.

Regarding the fluid retention and the gout. Have you been tested for anemia.

I recently requested to be tested found out that I had deficencys in iron and b12 meaning I had

by gordyboy (Aug 2)

Hi Sandy,Had imatinib for 12months with fluid retention (swollen feet) consultant said increase feurosemide to 60mg from 40mg until it reduces.I'm now on dasitinib and have same swollen feet. Is it
Category: Drug-drug interactions

Replies: 2

Last updated: 2 August 2017
nurserachel on 31 July 2017

Category: Blood tests

Replies: 4

Last updated: 1 August 2017

BCR-ABL results inconclusive
by nurserachel (Aug 1)

Hi, yes I guess how people work it out. Per microliter mine at the moment works out at 24,000. Planning on seeing the haematologist and then hope my results don't take too long now. Thanks for

by AlastairC (Aug 1)

Hi Rachel. Most CML cases I've been aware of show an increase in WBC very quickly. MY WBC had been very low (around 2) for more than 15 years pre diagnosis. I moved home, changed doctors and the new

by nurserachel (Aug 1)

Yes it is an odd one really. My WBC varies with no apparent reason for change, varies from 14 up to around 23 with no obvious infection. In addition to this I have high inflammatory markers such as

by AlastairC (Aug 1)

Hi Rachel, its a little tricky to know where to start on this, but a few thoughts. What level is your high WBC? If it is high and stable my understanding would be that CML is unlikely - most of the
Category: Blood tests

Replies: 4

Last updated: 1 August 2017
matthew.hulbert on 31 July 2017

Category: About CML

Replies: 1

Last updated: 1 August 2017

Myeloma help!
by sandy craine (Aug 1)

I suggest your friend contacts Myeloma UK.... quick google search brings up this link to their discussion forum. https://www.myeloma.org.uk/how-we-can-help/meet-others/discussion-forum/

by matthew.hulbert (Jul 31)

Hello everyone - I have had CML for over 10 years now, however a friend of mine has just been diagnosed with Myeloma - does anyone know any blogs like this terrific one he can access. I have warned
Category: About CML

Replies: 1

Last updated: 1 August 2017
annie t on 31 December 2016

Category: Side effects

Replies: 9

Last updated: 1 August 2017

Cramps
by Richard42 (Aug 1)

Cramps were one of the main imatinib side effects I had. Hands, feet and back. They were quite significant at first but over time they reduced to the extent they had essentially

by annie t (Jul 22)

Hi - Yes even I get cramps in hands, abdomen and back. Breasts cramps are reduced to a greater extend. Good that you have started exercising. It does help.
Regards
Annie

by EvaH (Apr 19)

Checked and Magnesium levels are fine. With a bit more weight lifting the hand cramps are not happening now, still a few pre-cramps on the old abs but prob due to non-usage also

by sandy craine (Apr 2)

Eva, you might want to check your magnesium levels and try supplementing with Mag. Sandy
Category: Side effects

Replies: 9

Last updated: 1 August 2017
annie t on 21 July 2017

Category: Blood tests

Replies: 4

Last updated: 30 July 2017

BCR-ABL
by annie t (Jul 30)

Hi Sandy,
I met with my main doctor and he mentioned that the lab has upgraded to IS scale and not to worry about my current percentage.
Regards
Annie

by sandy craine (Jul 29)

Hi Annie,
yes 3 months to wait for another PCR does seem a long time. Could you persuade your doctor that you are concerned and would like another PCR test now?
Sandy

by annie t (Jul 22)

Thanks Sandy for the response. Actually there is no change in the lab. Also rather last 3 were negative and since it is now .01 now I am more worried. Doctor did mention to have a test done after 3

by sandy craine (Jul 22)

Annie, don't worry as your BCR-Abl ratio are still pretty low. This change is from one test so could be an anomaly. Has anything changed such as the lab that did this latest test as opposed to the
Category: Blood tests

Replies: 4

Last updated: 30 July 2017
Daphne Lynn on 7 April 2017

Category: Blood tests

Replies: 10

Last updated: 29 July 2017

Conversion levels
by sandy craine (Jul 29)

HI Daphne,
If you already have cardiac issues then maybe nilotinib would be contraindicated? Please ask your clinician.
Sandy

by chrissie (Jul 26)

Hi Daphne
Sorry to be late in answering but I only just went onto this site. By now I guess you've had the clinic appt and made a decision regarding Dasatinib or Nilotinib. Both seem to have very

by Daphne Lynn (Jul 24)

Three months on and I'm picking up an old thread to avoid retelling my whole story...
...Moving on I have now been taking Imatinib since December and actually feeling very well - I really didn't

by chrissie (Apr 12)

Good news, Daphne. It does help to have confidence in your haem and I have found them to be excellent. Take his advice and have a good summer. It's the downward trend which is the most important
Category: Blood tests

Replies: 10

Last updated: 29 July 2017
Amit on 4 July 2017

Category: Uncategorised

Replies: 25

Last updated: 29 July 2017

My Story
by sandy craine (Jul 29)

Great news Chrissie.
Sandy

by Olivia (Jul 28)

Brilliant! I'm so happy for you, Chrissie.

by chrissie (Jul 27)

Hi Olivia
Just had my PCR emailed and since starting on 300mgs on June 21st and 3 months+ on generics I'm the lowest ever at 0.0025 so am very happy. Just hope it keeps down as it's such early days

by Olivia (Jul 20)

Hi Chrissie
Congratulations - and I hope the test goes well. I'd forgotten about puffy eyes until I saw the Spirit2 nurse at my last check-up - I hadn't seen her for some time and she
Category: Uncategorised

Replies: 25

Last updated: 29 July 2017
HelenS on 24 July 2017

Category: Drug-drug interactions

Replies: 1

Last updated: 24 July 2017

Antibiotics and Imatinib
by David Fitz (Jul 24)

Hi Helen,
Antibiotics and TKIs are routine. However a cold is a viral infection, which antibiotics would have no effect on. If your doctor thinks it might be a bacterial infection they may prescribe

by HelenS (Jul 24)

I have been taking Imatinib for 6 months. I am pretty sure I now have sinusitis as a result of a lingering cold. Hope to get to GP tomorrow. But can anyone tell me if it's OK to take antibiotics
Category: Drug-drug interactions

Replies: 1

Last updated: 24 July 2017
HelenS on 21 July 2017

Category: About CML

Replies: 2

Last updated: 24 July 2017

Patient Conference
by HelenS (Jul 24)

Many thanks for the info. Helen

by sandy craine (Jul 22)

As the moment the UK Patient conference will take place a couple of months later than ususal... i.e. in mid January 2018 rather than in Oct/November this year. This is because the clinicians

by HelenS (Jul 21)

I wondered if anyone knew if there was going to be a UK CML Patient Conference like the one I saw on this site that took place last year in Manchester ?
Category: About CML

Replies: 2

Last updated: 24 July 2017
Amit on 22 July 2017

Category: Uncategorised

Replies: 0

Last updated: 22 July 2017

Multi Vitamins
by Amit (Jul 22)

Just wanted to find out while we are on Imatinib whether there would be any absorption issues if we take Aloe Vera based Multi.Vitamins ? I take a few of them which include Iron and so i was
Category: Uncategorised

Replies: 0

Last updated: 22 July 2017
zara786 on 17 July 2017

Category: Uncategorised

Replies: 6

Last updated: 20 July 2017

CML and pregnancy
by sandy craine (Jul 20)

Hi Zara,
City Hospital is one of the UK major centres for CML. If your white count does get higher than 80 you might want to ask if your doctors if they can control the counts by a procedure

by zara786 (Jul 18)

I live in Lincolnshire and I'm being treated in City hospital in Nottingham.

by David Fitz (Jul 17)

I imagine those infections might be interferon injections - if it is, it’s nothing to be scared of. Interferon has a long history and is well understood. So long as you are frequently monitored, and

by zara786 (Jul 17)

The video link you sent dose not open
Category: Uncategorised

Replies: 6

Last updated: 20 July 2017
Brynhenefield on 15 July 2017

Category: Side effects

Replies: 2

Last updated: 18 July 2017

Nausea/Vomiting & Intestinal Cramping
by johnw1001 (Jul 18)

Hi Bryn,
May I make a few observations but perhaps I really dont know the complete answer.It might be useful to revue when the imatinib is taken and with what type of food.There have been threads on

by David Fitz (Jul 15)

My gosh Bryn, that sounds awful.
In all honesty, the way I would manage that situation would be to demand to switch to another TKI. It seems, from what you have said, that imatinib is causing

by Brynhenefield (Jul 15)

Hi everyone!
My dad was diagnosed with CML in April 2017. He has been on 400mg imantinib since late April. Since starting he has struggled with severe vomiting and wretching. It happens
Category: Side effects

Replies: 2

Last updated: 18 July 2017
ian hinley on 6 October 2016

Category: Treating CML

Replies: 9

Last updated: 18 July 2017

Hopefully exciting times ahead - Sprycel dose reduction!
by ian hinley (Jul 18)

9 Month UPDATE: Have just had third 3 month test results since halving in September 2016 and still at 0.004 so MMR 4.5 still!! This still proves proves that half the dose (50mg Sprycel) is

by Philip (Jun 5)

HI Ian: I joined CML Support about a year and one month ago. I posted for the first time yesterday. As to your dosage reduction on Sprcyel, here is what I have to say.
I was

by David Fitz (Apr 13)

Ian,
That's great ... and assuming an IS calibrated result 0.003% is plenty more than MMR (MR3), it's MR4.5 - an excellent result! Congratulations.
David.

by ian hinley (Apr 13)

6 Month UPDATE: Have just had second 3 month test results since halving in September 2016 and still at 0.003 so MMR. Really chuffed as this proves that half the dose is keeping everything in
Category: Treating CML

Replies: 9

Last updated: 18 July 2017
sprycml on 15 July 2017

Category: About CML

Replies: 2

Last updated: 15 July 2017

How frequent are bone marrow biopsies?
by johnw1001 (Jul 15)

Hi there,
Just to add to what David has said it appears that the preference for undertaking a bone marrow biopsy in the early stages of CML treatment is about measuring the cytogenetics and the

by David Fitz (Jul 15)

There's no hard and fast rule. Many doctors are not taking bone marrow biopsies at all, even at diagnosis, and rely on PCR results from peripheral blood.
Some others adhere to older standards which

by sprycml (Jul 15)

I'm at one-year past diagnosis, and just wondering - how often do they tend to perform bone marrow biopsies? My doctor says he may or may not at the one year mark depending on my PCR levels.
Category: About CML

Replies: 2

Last updated: 15 July 2017