You are here

Forum

Karinne on 20 August 2017

Category: Drug-drug interactions

Replies: 3

Last updated: 27 August 2017

Niacin 500 mg twice a day
by sandy craine (Aug 27)

You might want to read about niacin (B3) here: http://www.doctoryourself.com/JOM1.html
B3 is a crucial vitamin for health in general - as are all of the B Vits. Niacin or a lack of it is also

by Karinne (Aug 22)

Thank you very much. You are very wise. I will search for another way.
Best,

by johnw1001 (Aug 21)

Hi Karrine,
The reason I reply to you is that I was considering niacin or Vitamin B3 as my uric acid is low and this would push it up nearer to normal.Niacin it seems occurs naturally in

by Karinne (Aug 20)

Hello everybody,
I would like to take Niacin (to decrease my cholesterol) at 500 mg twice a day. Did anybody knows if it is safe with my 100 mg of Sprycel? The field is very confusing when
Category: Drug-drug interactions

Replies: 3

Last updated: 27 August 2017
ClaudiaSS on 11 August 2017

Category: Children & young people

Replies: 2

Last updated: 26 August 2017

Newly diagnosed 16yr old
by sandy craine (Aug 26)

Hi Claudia,
So sorry your son has been diagnosed with CML... a rare occurrence for his age group. Nevertheless, the outlook is good and it seems from what you say he is responding to therapy with

by Justine (Aug 11)

Hi Claudia,
As a mom my heart goes out to you. Many blessings to you and your son. Thank goodness for Glivec/Gleevec! I had bone pain and cramps for a while but Ibuprofen really helped. These

by ClaudiaSS (Aug 11)

Hi. My name is Claudia and I am the mother of a 16yr old, Andres, diagnosed on July 20th. We suffered a severe crisis as his white blood cell count rose to 600,000u and it derived on
Category: Children & young people

Replies: 2

Last updated: 26 August 2017
Amit on 21 August 2017

Category: Side effects

Replies: 4

Last updated: 23 August 2017

Sgpt(ALT) , SGOT (AST)
by EvaH (Aug 23)

How frequently are the checks? I was getting weekly bloods at your stage.
Though I never had an issue with liver, my platlets shot up at some point after diagnosis and then came back to normal.

by Amit (Aug 21)

2 months 10 days since i have been disgnosed with CML but this liver issue has only come up in my blood checkup yesterday.

by Amit (Aug 21)

2 months and 10 days.

by EvaH (Aug 21)

This is liver transaminase. How long since you were diagnosed?
Category: Side effects

Replies: 4

Last updated: 23 August 2017
FAISAL JAVED on 16 August 2017

Category: About CML

Replies: 3

Last updated: 23 August 2017

Suggestion about Treating the CML
by EvaH (Aug 23)

Its called TasiTrack, I used it on Android and its a free download. I think its created by a fellow patient and its certainly easier than setting a bunch of alarms.
I have been writing a CML diary

by grells (Aug 22)

What's the app?!
This is good, firm advice. It must be very difficult not to understand what's going on. I have certainly felt a lot better about my diagnosis since i came here and read

by EvaH (Aug 17)

Dear Faisal

Sorry about your diagnosis and welcome to our club! I was diagnosed in July of 2016 and have taken both Tasigna and Imatanib (Gleevec).
I am going to use very stern words in a

by FAISAL JAVED (Aug 16)

Hello unfortunately i have been diagnosed CML Cronic Phase 2 month Ago.My Doctor Suggested me Tasigna 200MG 2+2 a day.I am now feeling well by using this medicine.but at every morning and
Category: About CML

Replies: 3

Last updated: 23 August 2017
Rebecca Bonnell on 22 August 2017

Category: Side effects

Replies: 0

Last updated: 22 August 2017

Severe dental erosion associated with imatinib mesylate therapy
by Rebecca Bonnell (Aug 22)

I have been having severe problems with my teeth breaking and eroding and i eat healthily and cook proper meals with veg or salad for myself(Trained Chef) and i wondered if this was down to
Category: Side effects

Replies: 0

Last updated: 22 August 2017
walfriedmayer on 17 August 2017

Category: About CML

Replies: 8

Last updated: 19 August 2017

BCR result
by walfriedmayer (Aug 19)

Martin also to you thanks a lot for your answer.

by walfriedmayer (Aug 19)

Dear Ellie, thanks a lot again. I know there are some clinical trails which combines nilotinib and interferon. And from what I read (also your development) there are indications whereby a

by Ellie Regina Grey (Aug 19)

Hi again,
I thought to clarify that in my case, i was administered interferon as an adjuvant immunotherapy to nilotinib in a clinical trial setting. So, it is not a readily available treatment

by walfriedmayer (Aug 19)

Dear all, First of all thanks a lot for your explanations; it cools me a bit down. Bit i read the more it goes down at the beginning of the treatment the higher is the likelyhood to stopp treatment
Category: About CML

Replies: 8

Last updated: 19 August 2017
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