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Jason Graves on 22 October 2019

Category: Uncategorised

Replies: 9

Last updated: 24 October 2019

Transplant.
by jasonswife1686 (Oct 24)

Please see my post in the forum called reason for transplant

by David83 (Oct 23)

Hi Jason,
I don’t know if this helps but I had my counts crash when I started on Nilotinib after switching from Imatinib. I had to come off all treatment for 9 weeks mainly due to platelets

by David Fitz (Oct 23)

Even 100mg of dasatinib? That’s a lot for someone who seems sensitive to myelosuppression. It increasingly looks like it might be too much for anyone!
Transplant is no joke. You must exhaust

by scuba (Oct 23)

Jason,
I suffered the same issue - very low blood counts - especially neutrophils and platelets. My doctor is a researcher in the field and worked with me over a year to "condition" my
Category: Uncategorised

Replies: 9

Last updated: 24 October 2019
domonthebay on 22 October 2019

Category: Side effects

Replies: 4

Last updated: 23 October 2019

Dasatinib Side Effects and any suggested remedies or counter agents?!?
by David Fitz (Oct 23)

Muscle pains ... magnesium cream or oil can help if it’s a crappy sort of pain. Personally, I find a long hot bath very helpful and often combine that with magnesium flakes. You can get a kilo

by domonthebay (Oct 23)

Thank you David for your response... I plan to speak with my doctor on both suggestions. Any ideas about what you or others have done for the muscle/chest pains or the itching? I keep

by David Fitz (Oct 22)

Breathlessness on dasatinib warrants a couple of checks ... firstly, you want to rule out pleural effusion, so that would be a quick chest x-ray to rule that out. Secondly, PAH (pulmonary arterial

by Mick E (Oct 22)

I was having unexplained breathlessness even on 25mg. I have since been taken off them but the problem although not as bad is still present. Currently investigating for the possibility
Category: Side effects

Replies: 4

Last updated: 23 October 2019
Damian Gabilondo on 21 October 2019

Category: Uncategorised

Replies: 7

Last updated: 23 October 2019

PCR report 17 months, what awaits me ????
by Damian Gabilondo (Oct 23)

Hello I am from Argentina, the last name is of Spanish / French origin, there are not many with that last name, you must be a good person your oncologist hahaha.
Thank you, try to watch the videos,

by hannibellemo (Oct 22)

Damian, congratulations on your excellent reports in such a short period of time.
On another note, my oncologist's married name is Gabilondo. Her maiden name is Ferrari. She and her husband are

by AlastairC (Oct 22)

Hi Damian,
The explanation of this which worked for me was repeated at this year's UK patient day. The talks are on this link If you scroll down to Prof Richard Clark's talk in

by Damian Gabilondo (Oct 22)

Thank you very much for the answer, I never fully understood what is undetectable in this condition, I suggested that the answers 4.0 / 4.5 / 5 are levels of undetectable or complete molecular
Category: Uncategorised

Replies: 7

Last updated: 23 October 2019
scuba on 19 October 2019

Category: Uncategorised

Replies: 7

Last updated: 23 October 2019

Low-dose dasatinib (50 mg) update
by RC Kirk (Oct 23)

I think you're right about that. The conversion factors to IS do seem to follow some sort of curve. Here's the fine print from the PCR reports:
Methodology:
Total RNA was

by Antibody Boy (Oct 23)

Kirk,
It is possible that your PCR results were determined using external calibrators as opposed to a laboratory specific conversion factor. Labs back then were either "validating"

by David Fitz (Oct 21)

Sounds like a clerical error for that 0.914% MMR declaration alright.
The point in the primer relates to PCRs where there are < 100,000 assays. With more than 100,000 you can have confidence in

by RC Kirk (Oct 21)

I'm pretty sure all of the PCR results came from the same lab, but I could be wrong. I assumed it would be a linear relationship. Here's quote from the PCR primer: "This
Category: Uncategorised

Replies: 7

Last updated: 23 October 2019
Jclmal on 22 October 2019

Category: Treating CML

Replies: 6

Last updated: 22 October 2019

Gleevec 11+years knee pain
by Jclmal (Oct 22)

Thanks, take magnesium and potassium supplements. Try to remember to stretch. Even with CML busy life. Not quitting, like a little less pain and more energy. Appreciate the help

by Vijay Kumar Verma (Oct 22)

One more thing check ur posture , flat feet etc.mineral deficiency like mag, potasium, calcium.

David, Scuba will guide you much better.

Just a little bit of things from my side.hope you

by Vijay Kumar Verma (Oct 22)

Hi,

It may be due to tight hamstring .Do some strech and yoga.i'm sure ur knee feel happy after 2 or 3 session.if it help plz update.

by Jclmal (Oct 22)

Thanks for reply, I walk a lot at work. It seemed strange that just last few months when I rise up from sitting great pain in the knees. If I drive more than 20 minutes hurts. I played basketball a
Category: Treating CML

Replies: 6

Last updated: 22 October 2019
johnw1001 on 21 October 2019

Category: Side effects

Replies: 2

Last updated: 22 October 2019

Stopping /discontinuation-side effects
by Vikram (Oct 22)

Alastair c
Last pcr.......
TFR.... One year complete????
Any problem..... In TFR (last one year)???
Imatinib side effects discreases....... In TFR........
Your experience....... Please share last

by AlastairC (Oct 21)

Hi John,
After over 11 years on 400mg imatinib, I followed the Destiny protocol (I think your Lancet paper was probably on this) and cut to 200mg two years ago. 12 months ago tomorrow I took my last

by johnw1001 (Oct 21)

Hi All,
After being on Glivec/imatinib for nearly 14 years we are going to stop for up to 3 months in a few days as in early November we are scheduled for the implantation of iodine-125 seeds into
Category: Side effects

Replies: 2

Last updated: 22 October 2019
labros on 9 October 2019

Category: About CML

Replies: 6

Last updated: 21 October 2019

3-months results reveal that I achieved MMR in the peripheral blood but not CCyR in the bone marrow
by labros (Oct 21)

Hello Vicky,
Nothing more apart the conversation I had with the lab. The doctor just said that we should do the test again in 3 moths to verify that CCyR in the bone marrow has achieved.
L.

by VickyK. (Oct 21)

Hi Labros,

Any new info from your doctor?

Best

Vicky

by ColoradoGuy (Oct 11)

I had a strange result about a year ago too but probably the opposite from this example. My BMB showed 0.11 while blood pcr was around 0.3.....Dont fully understand it but don't really want another

by labros (Oct 11)

Thank you both for your answers. I've called the lab that did the analysis of the bone marrow, since I was curious as well. They've informed me that more than 20 molecules have been tested (
Category: About CML

Replies: 6

Last updated: 21 October 2019
Ontasigna on 20 October 2019

Category: Treating CML

Replies: 1

Last updated: 21 October 2019

Nilotinib - feeling very exhausted
by David Fitz (Oct 21)

Hi there,
I'm sorry to hear you're not feeling so good. Fatigue can be difficult to manage.
Firstly, this isn't a sign of your CML making a comeback or anything - so I hope you

by Ontasigna (Oct 20)

Hi there,
It's been 9 months since I am on Tasigna 400 mg BD and am on MMR(25-sep).
Since couple of days I am feeling very low and exhausted. Very lathergic n fatigue.
I almost have the same
Category: Treating CML

Replies: 1

Last updated: 21 October 2019
RC Kirk on 16 October 2019

Category: Treating CML

Replies: 6

Last updated: 20 October 2019

Precision dosing using concentration-controlled dosing of TKIs for CML could maximize the clinical benefit and minimize toxicity
by AlastairC (Oct 20)

Hi
This is the link to Prof Flanagan's team's paper on Pubmed.

by mamodei (Oct 19)

Interesting. I had quite a few side effects on the nilotinib, was switched to dasatinib after 2 months, and after 2 months on that my dose was lowered to 50 mg due to side effects. I

by RC Kirk (Oct 19)

Thanks Alastair, I had the plasma level checked once when I was taking 200mg/day. I guess my result was pretty much in line with the dose. Here's the result from that test:

by AlastairC (Oct 18)

I asked a question about therapeutic drug monitoring at last year's patient day, in I think the last Q&A session. Through my work some years earlier in toxicology I was aware of work
Category: Treating CML

Replies: 6

Last updated: 20 October 2019
mamodei on 9 September 2019

Category: Side effects

Replies: 12

Last updated: 18 October 2019

Neurological side effects with nilotinib or dasatinib
by kat73 (Oct 18)

Terrific! That's a wonderful result. I use to bargain with the gods in the early days: Either let me feel better or give me a good number so I can carry on through feeling bad

by mamodei (Oct 18)

It took a week for my lightheadedness to dissipate. I can drive to work again! I'm still having some other problems but hoping they will continue to minimize based on the experience

by mamodei (Oct 7)

My dose has been reduced to 50. Hoping this will turn things around for me.

by mamodei (Oct 2)

I have Lymes disease, which certainly muddies the water about what symptoms are what. This is not my first time with Lymes and usually the doxycycline gets the symptoms under control in just a
Category: Side effects

Replies: 12

Last updated: 18 October 2019
SwanValleySue on 27 January 2009

Category: Uncategorised

Replies: 5

Last updated: 18 October 2019

Depression condition - Medication could be the cause ?
by kat73 (Oct 18)

I spent two years trying to tease out that question, Alex! Certainly, the existential issues a cancer diagnosis brings forward can result in despair. But, two things to note (that were

by alexmcpee (Oct 18)

Although the medication could cause depression I am rather inclined to believe people have become depressed because of the diagnosis. I don't care who you are or how well you've responded we

by leslie chambers (Feb 9)

Hi Sue, I never had any problems while I was on Imatnib, but prior to that I was on Interferon for quite a time, but this led to severe depression, which without doubt was the worst period of my

by julie hubbard (Feb 2)

i have posted before on this subject, my 11 year old takes 500mg imatinib daily and does have periods of depression, he does not want to wake up in the morning, he is fed up with life etc and it is
Category: Uncategorised

Replies: 5

Last updated: 18 October 2019
jmonzione on 14 October 2019

Category: Children & young people

Replies: 11

Last updated: 18 October 2019

Small rise in PCR ABL test
by David Fitz (Oct 18)

Anything is possible, but you really first need to get either your latest result on the IS, or the IS conversion factor.
David.

by jmonzione (Oct 18)

So it’s plausible that my doctor did not notice a number missing from my report and I’m worried for nothing? I really don’t want to switch from sprycel over a misunderstanding -

by David Fitz (Oct 18)

That's pretty weird - to get an IS figure, you just need to apply the labs conversion factor. Simple arithmetic. Someone should be able to give you the labs conversion factor.
However, if

by jmonzione (Oct 18)

You guys are going to love this - I have international scale numbers for the tests I did on 4/29 (0.056) and 7/22 (0.046). When I spoke to the nurse they said they DID NOT have the international
Category: Children & young people

Replies: 11

Last updated: 18 October 2019
SamandRich on 16 October 2019

Category: Treating CML

Replies: 3

Last updated: 18 October 2019

Myelostat
by David Fitz (Oct 18)

Sam,
Bosutinib often works for patients who have had issues with other TKIs. The evidence seems to suggest it is somewhat more gentle in terms of side effect profile. Omacetaxine just isn't

by SamandRich (Oct 18)

Hi David

Sorry for the late reply, also nilotab, both not able to tolerate and started getting signs of toxicity.

Thanks for reply

Sam

by David Fitz (Oct 16)

Hi there,
I don’t have any experience with this medication, but others may know it better by it’s other names - Omacetaxine or Synribo, but if I’m reading things right this is an

by SamandRich (Oct 16)

Hi guys, hope you are all doing well. I've just had my medication changed to myelostat and read that it has severe nausea and hair loss as some of the side effects , has anyone else experienced side
Category: Treating CML

Replies: 3

Last updated: 18 October 2019
Mixail on 16 October 2019

Category: Blood tests

Replies: 4

Last updated: 18 October 2019

Has anyone seen this article from October 15th. Is this be real. Thank you.
by Mixail (Oct 18)

I have not any more about it.

by Vikram (Oct 18)

Miristen drug...... Any news and updates...?????
Only hope???
No update in internet
No news.........

by Mixail (Oct 16)

Thank you David.

by David Fitz (Oct 16)

Not necessarily not “real” - but it’s a mouse study, so a long way away from common in clinic.
All the same, there are upcoming trials that will look to combine other drugs (
Category: Blood tests

Replies: 4

Last updated: 18 October 2019
Sd on 12 October 2019

Category: Uncategorised

Replies: 7

Last updated: 17 October 2019

Thinning hair
by koralia.pappi (Oct 17)

Hi,
I'm also on Nilotinib, 4.5 months now, I have seen some increased hair loss too (nothing too serious, but definitely more than before).
But in the last few weeks I think it has reduced

by Sd (Oct 15)

Hi Vicky,
I never have had eyebrows, so no loss there. None the less, all these messages are encouraging. I don't intend to be vain. I am just curious about what others have experienced.
Thanks

by VickyK. (Oct 15)

Hi!

I had the same problem but with nilotinib.The first 3 months I was loosing a lot of head hair and my eyebrows almost disappeared but now after one year are much better.Hope the same for

by Sd (Oct 13)

Actually menopause took care of my leg hair and already started contributing to thinning hair on my head.
May I ask if you took imatinib initially? If so why are you now taking nilotinib?
Category: Uncategorised

Replies: 7

Last updated: 17 October 2019
lupus on 16 October 2019

Category: Blood tests

Replies: 2

Last updated: 16 October 2019

Understanding my PCR results
by David Fitz (Oct 16)

If your doctor is not being helpful, just ask for a copy of the lab report. You’re entitled to it and it will tell you what you need to know and we can help you interpret it.
David.

by RC Kirk (Oct 16)

Hi Tomas,
It might be helpful for you to get copies of your BCR/ABL1 PCR reports. If you're correct and your three month PCR score was 1.4% IS (International Standard), then you're

by lupus (Oct 16)

Hello everyone,
could you please help me understand my pcr results as my physician is kind of enigmatic about this particular matter. Today (after 4 months), I finally succeded in convincing (we had
Category: Blood tests

Replies: 2

Last updated: 16 October 2019
Nazia on 14 October 2019

Category: Treating CML

Replies: 9

Last updated: 16 October 2019

Currently diagnosed CML
by David Fitz (Oct 16)

Don't just accept the suffering ... if it continues, or gets worse talk to your doctor about trying a different TKI.
In the meantime, experiment with heat (hot water bottles, hot bath) or cold (

by Nazia (Oct 16)

Thanks David,

My pain is constant not as cramps

Its nor too sharp neither mild it is moderate but keeps me restless

I really want to get rid off it because it has disturbed my

by David Fitz (Oct 16)

Hi again Nazia,
Is the pain constant, or does it come and go? When I had sharp pains at the start of my treatment, they would be not too bad and then suddenly for a very short time extremely painful

by David Fitz (Oct 16)

Well, it’s just plain old codeine - a simple opiate. It works well on pain. Addiction problems with opiates happen when taken for a long time, and in the absence of actual pain to deal with. I
Category: Treating CML

Replies: 9

Last updated: 16 October 2019
Aeje10327 on 11 October 2019

Category: Blood tests

Replies: 2

Last updated: 15 October 2019

Neutropenia when starting gleevac
by kat73 (Oct 15)

Yes, a lot of us get that low, and some of us stay there. If it drops down to .5 the docs begin to get nervous. When I was on Gleevec, it took me some months (and a couple of breaks,

by Crfharris (Oct 12)

My neutrophils dropped to 1.3 after 30 days on imatinib. Doctor said they didn't want to see it drop below 1 and this was not unusal. He wasn't sure if it had already dropped to the lowest

by Aeje10327 (Oct 11)

I have been on 400 mg of gleevac for around a month. I just went for follow up and my WBC count was 1, 0% neutrophils. I know people have mentioned that their counts dropped when first starting
Category: Blood tests

Replies: 2

Last updated: 15 October 2019
scuba on 12 October 2019

Category: Uncategorised

Replies: 2

Last updated: 15 October 2019

Food (or lack thereof) for thought ...
by scuba (Oct 15)

You need to be fasting more than two days to get the autophagy benefit. Autophagy ramps up when your body enters ketosis. I verify using ketone strips.
Staying in ketosis for a period of time allows

by Antibody Boy (Oct 15)

Cool insights regarding potential immune cell trafficking. I have been intermittent fasting regularly for nearly a year now with an eating window of 6-8 hours per day. The purpose of this is

by scuba (Oct 12)

https://www.wbur.org/commonhealth/2019/08/23/intermittent-fasting-immune...
'Magic Soup': How Intermittent Fasting May Enhance The Immune System
Category: Uncategorised

Replies: 2

Last updated: 15 October 2019
ian hinley on 17 October 2018

Category: Treating CML

Replies: 65

Last updated: 12 October 2019

Starting TFR in November after 9 years of daily drugs
by ian hinley (Oct 12)

Yes am taking 4 Brazil nuts daily and also supplementing vitamin d. Hopefully just bouncing and next month will be a key result 🤞

by scuba (Oct 12)

Ian - There does seem to be a trend, but it is still below the "resume" threshold.
Are you taking selenium? (200 mcg per day). Recent research suggests selenium interferes with leukemic

by ian hinley (Oct 12)

Results today not so good up to 0.084 from 0.030 last month but still below 0.1 so have couple of months drug free at least ahead. 11 months TFR now, so will make it over a year drug free but still

by scuba (Sep 19)

You are in the noise of the test. You are looking very stable.
Also - we don't know if your levels are now the result of normal bcr-abl formation that happens naturally in normal population. In
Category: Treating CML

Replies: 65

Last updated: 12 October 2019