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dadbags on 28 April 2019

Category: Uncategorised

Replies: 2

Last updated: 2 May 2019

OFF GLEEVAC
by onekayaker (May 2)

How awesome for you!!! Always good to read good news.

Stephanie

by bendicco (Apr 30)

Good for you!!! I too see someone at Sloan, they are all so wonderful! I remember my bone marrow aspiration, NOT done at sloan, and it was only with a topical , OMG 1000 times worse than

by dadbags (Apr 28)

HI PEOPLE-well its been14months since im off gleevac(great drug my opionion)no CML detected-0.0000-so now its 18years since i was diagnosed in SLOAN KETTERING by my angel DR.NELY CATHCART!ill b 70in
Category: Uncategorised

Replies: 2

Last updated: 2 May 2019
Ontasigna on 29 April 2019

Category: Treating CML

Replies: 5

Last updated: 30 April 2019

Spleen still enlarged after 4months
by David Fitz (Apr 30)

Spleen size is best seen by ultrasound, but a good clinician with a well placed finger can tell a lot just by prodding.
If your bloods are otherwise good, your spleen should reduce in size

by Ontasigna (Apr 30)

Thanks David. I started feeling discomfort again below left lower rib cage. Worried if spleen started to increase.
Is keeping a tab on wbc good enough to monitor spleen?

by David Fitz (Apr 29)

My spleen was 14cm palpable at diagnosis, and looking back at my notes it took a good month before it retreated back into the rib area. I don't have any further notes as to how long it actually

by Ontasigna (Apr 29)

My spleen @ dx was 22 cm and on Feb 22(usg) it was 14.4 cm as of today it's 13.6cm.
Ideally, I was hoping it to be @normal size. I have been checking WBC count every 2 weeks they are well within
Category: Treating CML

Replies: 5

Last updated: 30 April 2019
Mike B on 9 April 2019

Category: Treating CML

Replies: 11

Last updated: 30 April 2019

MMR Finally at 29 months
by RC Kirk (Apr 30)

Hi Eric, If I'm reading the study correctly, then only two people weren't able to make it to the end of the study. I think the staggered entry of people into the study makes it

by Eric Dril (Apr 27)

The study results are very reassuring. But isnt most international guidelines (except for MDACC's inhouse guideline) still saying 100mg. Also still a little cautious that the study you quoted only

by Diane CW (Apr 14)

Yes I think mutation testing was done with my second bone marrow biopsy last May. But I was never told the result and I didn’t ask (I think I was still in shock at the time and didn’t

by Job Guerra (Apr 11)

Diane - Did you ever have mutation testing done? It could be possible that you have a mutation that would respond favorably to Dasatinib. I think the SCT conversation is because it takes
Category: Treating CML

Replies: 11

Last updated: 30 April 2019
Jason Graves on 28 April 2019

Category: Uncategorised

Replies: 7

Last updated: 30 April 2019

Wife’s cytogenetic report
by Jason Graves (Apr 30)

Hello everyone. As of now I don’t think her vitamin D has been checked. In my opinion I don’t think she’s been on any tki’s long enough to give them a fair chance. That

by RC Kirk (Apr 30)

Hi Sarah, It sounds like you have a good plan of action for the next month or so. The question is: Why hasn't your BCR-ABL1 percentage gone down more?
Maybe it's that there

by scuba (Apr 29)

Sarah,
from:
https://www.cancer.net/cancer-types/leukemia-chronic-myeloid-cml/phases
"Accelerated phase. There is no single definition of accelerated phase. However, most patients with this

by jasonswife1686 (Apr 29)

Kirk, I finally have my own account and can reply with it.
I met with my oncologist today. Heres what went down:
Blood work, my counts are still way to low and not strong enough to start back
Category: Uncategorised

Replies: 7

Last updated: 30 April 2019
Poppert on 21 January 2019

Category: Blood tests

Replies: 4

Last updated: 29 April 2019

”GUS sensitivity”?
by Poppert (Apr 29)

I got this explained from my doctor today.
”GUS sensitivity” in the lab report is just how good the lab did in analysing tests that day.
There are variations when analysing batches of

by Tbrand (Feb 4)

Don’t know about the Gus, but I’ve been on 600 since diagnosis and was .02 at 12 months. May well be a good thing to increase.

by Poppert (Feb 4)

So I got my 12 month PCR result back. Results so far had been:
0 months: 114%
3 months: 12.7%
6 months: 1.3%
9 months: 0.19%
It was looking so good and I was hoping to get below 0.1% at 12 months.

by RC Kirk (Jan 23)

I found this: Is the BCR-ABL/GUSB transcript level at diagnosis an early predictive marker for chronic myeloid leukemia patients treated with imatinib?
https://www.ncbi.nlm.nih.gov/pmc/
Category: Blood tests

Replies: 4

Last updated: 29 April 2019
ponce71 on 26 April 2019

Category: Uncategorised

Replies: 8

Last updated: 27 April 2019

Any person who has developed any psychological or emotional feelings due to the gleevec medication?
by Tanya Cuffe (Apr 27)

Thank you Philip,yes the things you suggested are so necessary and I am lacking in the area of a hobby and a nice friendship...Always thought I would be with another man really quickly however

by Philip (Apr 27)

Tanya, I feel like, those of us with CML, are all in this together even though we have not formally met each other. It helps me to move the ball a little further down the field each day knowing that

by Tanya Cuffe (Apr 27)

Yes I have had and continue to have depression anxiety suicidal thinking and a host of other nasties since being on Gleevec,which I have taken for 18months now.My life has been quite challenging too

by Tbrand (Apr 26)

When I take my Imatinib, how sweet it is! The diagnosis was the hard part.
Category: Uncategorised

Replies: 8

Last updated: 27 April 2019
Jason Graves on 25 April 2019

Category: Uncategorised

Replies: 11

Last updated: 27 April 2019

Not sure if wife tki’s are working.
by Jason Graves (Apr 27)

She does have 1% blast at original diagnosis. The paper work also reads she has auer rods. From what I’ve read that should only be in aml what are your thoughts on that?

by scuba (Apr 26)

She should not be taking 100 mg.
https://www.ncbi.nlm.nih.gov/pubmed/29723397
I can't stress this enough. 100mg dasatinib is too high as an initial starting dose for chronic phase treatment (i.e

by Jason Graves (Apr 26)

She was prescribed 100mg. So that might be to much.

by RC Kirk (Apr 26)

Hi Jason, Like Scuba said, if the Sprycel is causing myelosuppression then it would be better to take a lower daily dose than to have breaks in treatment. The doctor and pharmacist will
Category: Uncategorised

Replies: 11

Last updated: 27 April 2019
Sonia0609 on 26 April 2019

Category: Side effects

Replies: 2

Last updated: 26 April 2019

BRUISING 600 MG IMATINIB
by Tbrand (Apr 26)

I have been on 600mg Imatinib for almost 3 years and never had bruises, only from obvious reasons.

by Felix (Apr 26)

Hi Sonia ,I was on 400 mg of Imatinib for about 15 months ,I did have some small bruising just along my bra line under my bust ,but it never bothered me and my Doc never worried about it .Once

by Sonia0609 (Apr 26)

Hi everyone,

Woke up this morning and found a bruise on my stomach. I'm worried, as it reminded me of my diagnosis in 2017. Could bruising be a side effect of imatinib (I started 600 mg on
Category: Side effects

Replies: 2

Last updated: 26 April 2019
Jason Graves on 26 April 2019

Category: Uncategorised

Replies: 1

Last updated: 26 April 2019

Auer cells
by scuba (Apr 26)

You probably mean blood cells that contain Auer rods and are most associated with acute leukemias, APL, in particular.
http://www.bloodjournal.org/content/126/1/121?sso-checked=true

by Jason Graves (Apr 26)

What are auer cells in cml.
Category: Uncategorised

Replies: 1

Last updated: 26 April 2019
Nimbus2 on 26 April 2019

Category: Uncategorised

Replies: 0

Last updated: 26 April 2019

Researchers find drug-resistant gene for Gleevec
by Nimbus2 (Apr 26)

This looks like another interesting line of research and discovery.

http://www.koreabiomed.com/news/articleView.html?idxno=5611
According to the hospital, about 10 percent of the chronic
Category: Uncategorised

Replies: 0

Last updated: 26 April 2019
Ontasigna on 17 April 2019

Category: Treating CML

Replies: 12

Last updated: 24 April 2019

Nilotnib and PPI
by Felix (Apr 24)

Hi, it is ok to take certain Antibiotics but beware they can make your BCR- ABL rise.Mine did even tho my doctor said it wouldn't .Think my Doc panicked and sent me to a more specialist

by Ontasigna (Apr 24)

Great!! Thanks so much!

by David Fitz (Apr 23)

In general, yes antibiotics are usually absolutely fine. But there are a small set of them that are not - e.g. erythromycin and clarithromycin. These are called macrolides and you generally identify

by Ontasigna (Apr 23)

Is it ok to take antibiotics while on nilotnib?
Thanks for sharing the knowledge. It helps a lot.
Category: Treating CML

Replies: 12

Last updated: 24 April 2019
Nimbus2 on 20 April 2019

Category: Uncategorised

Replies: 8

Last updated: 24 April 2019

Is a transcript type different from a mutation?
by Nimbus2 (Apr 24)

Deleted by Nimbus2 because my observation is incorrect.

by Nimbus2 (Apr 24)

Thank you, Scuba, your posting is very helpful and has helped me do more googling.
I found the following:
Schematic diagram of the position of specific primers on the exons of BCR and ABL used in

by Poppert (Apr 24)

But what about this nomenclature:
https://images.app.goo.gl/FzYSnFeaqAbh54fS8
or
https://www.google.com/search?q=cml+mutation+tki&rlz=1CDGOYI_enSE592SE59...
when you talk about ”T315I

by scuba (Apr 23)

All transcript types are the result of DNA mutations. The so-called Philadelphia chromosome is the result of a translocation mutation where a piece of DNA from one chromosome is swapped onto another
Category: Uncategorised

Replies: 8

Last updated: 24 April 2019
Tanya Cat on 6 April 2019

Category: Uncategorised

Replies: 9

Last updated: 23 April 2019

Stopping Glivec on my own for a while...
by Tanya Cuffe (Apr 23)

My doctor has not gotten back to me so I have still been taking Glivec and now antidepressants and HRT for “chemopause”.I still feel awful so am thankful to be seeing new Doctor in

by David Fitz (Apr 22)

Tanya,
I have a good relationship with my doctor. She says that when push comes to shove, I’m in control of what I take and how much. She just made me promise that if I ever did decide to stop

by EvaH (Apr 22)

I can see if the side affects are awful why you might want to try this.
But as others have said DO NOT TRY THIS AT HOME. By which i mean, dont try it without supportive medical supervision and a

by Felix (Apr 12)

Hiya Tanya just had my recent blood results after starting Dasatinib.13th February was 0.435 % but still on Imatinib,test from20th March which was part Imatinib but only been on Dasatinib for 10
Category: Uncategorised

Replies: 9

Last updated: 23 April 2019
Dustylloyd on 20 April 2019

Category: Other conditions

Replies: 3

Last updated: 22 April 2019

Philosophy on life
by EvaH (Apr 22)

my initial thought on diagnosis was "I just spent what might be the last good year of my life in a job i hate, why did i do that?"
So I try not to do that again, unfortunatly it means i

by Dustylloyd (Apr 20)

Thank you David for a perfect view and comment on my question, I think confidence took a bit of a knock when I was diagnosed, and it’s when you get other people’s views on your

by David Fitz (Apr 20)

Maybe finding a new philosophy on life would mean admitting that CML has changed you (nothing wrong with that, either). But perhaps just going on as you always have is a sign of strength that you

by Dustylloyd (Apr 20)

Hope this doesn’t seem strange, but I was just wondering how many “members” have got, and stuck to a new philosophy on life, when I was diagnosed January 2015 I promised myself
Category: Other conditions

Replies: 3

Last updated: 22 April 2019
Philip on 20 April 2019

Category: Blood tests

Replies: 5

Last updated: 21 April 2019

Recent Blood Work
by scuba (Apr 21)

I feel no side effects on 20 mg.

by Philip (Apr 21)

Think that's what I've been thinking after having a few hours to think about it if ya know what I mean. I was taking 50mg of Sprycel for years. Went undetected until I stopped TKI therapy 3

by scuba (Apr 21)

Philip,
I take 20 mg sprycel and remain PCRU ('undetected'). Consider starting at that does and see if you PCR plummets which I suspect it will. You can always increase dose.

by Philip (Apr 21)

Hey David, thanks for the quick reply! I decided to discontinue TKI and try TFR after having a Complete Molecular Response for 8 going on 9 years. Was really hopeful that TFR would work for me.
Category: Blood tests

Replies: 5

Last updated: 21 April 2019
Reetz88 on 21 April 2019

Category: About CML

Replies: 2

Last updated: 21 April 2019

CML Blast Crisis
by Tbrand (Apr 21)

I was diagnosed borderline blast phase on NewYears eve 2015. Months before felt under the weather, a few weeks of bone pain when walking. It all went away and went to the Dr. for a knee issue. Took

by Philip (Apr 21)

I was somewhere between the accelerated phase and acute phase in 2009. Can't remember the percentage of blast cells I had. Rather than a stem cell transplant, I was given a traditional chemo

by Reetz88 (Apr 21)

My husband was diagnosed with CML BLAST Crisis in August. He had a bone marrow transplant on Feb 27, 2019, from unrelated donor. Would love to hear from others who have had the blast
Category: About CML

Replies: 2

Last updated: 21 April 2019
Justine on 16 April 2019

Category: Other conditions

Replies: 4

Last updated: 21 April 2019

Frequent cold sores
by Philip (Apr 21)

Justine, after my initial diagnosis, I found I was prone to colds. One after another. Once we found a dosage that was right for me, the serial colds stopped. I had wound-up in the hospital with

by David Fitz (Apr 17)

Don’t feel bad about asking your doctor, but it might be a more appropriate question for your GP / primary care doctor at least at first. Cold sores are generally caused by herpes viruses, and

by Justine (Apr 17)

Thanks Tbrand. Glad yours have gotten less frequent and smaller!

by Tbrand (Apr 17)

I have had those since I was a little kid. I’ve had my entire lips covered. They pop up one after the other. They suck, you can get Acyclovir 400mg prescribed, but is more effective at the
Category: Other conditions

Replies: 4

Last updated: 21 April 2019
nicolaclubb on 19 April 2019

Category: Organising your life

Replies: 5

Last updated: 20 April 2019

New diagnosis and complications
by scuba (Apr 20)

During this phase it is on again off again. He should not take ANY nilotinib until his Neutrophil count is above 1.0. He should stop taking nilotinib when his neutrophil count falls below 0.4
He

by Anna.h (Apr 20)

Thanks for sharing all this informatoin here I hope he gets better soon. My father is almost in the same condition and I am going to tell him about taking D3 and curcumin. After 10 days of no

by scuba (Apr 19)

Be very careful. Any sign of a fever - temperature above 99 degrees F (37.2 C) - go to the emergency room. You will need emergency attention. You do not want to take any fever reducer and wait until

by nicolaclubb (Apr 19)

Thank you for your reply. I had mentioned my Vitamin D the other day and they totally dismissed me?
Just got a copy of my blood results today and my neutrophil has now gone down to 0 which is
Category: Organising your life

Replies: 5

Last updated: 20 April 2019
Nimbus2 on 20 April 2019

Category: Uncategorised

Replies: 0

Last updated: 20 April 2019

Kinase Donain Mutation Testing
by Nimbus2 (Apr 20)

My consultant has stated, "I have asked the cytogenetic laboratory to initiate a KD mutation testing". With Googling, I can see that KD means "kinase domain".
What would I expect
Category: Uncategorised

Replies: 0

Last updated: 20 April 2019
LouiseS on 12 April 2019

Category: Uncategorised

Replies: 7

Last updated: 20 April 2019

Husband has reached undetectable
by Sarah63 (Apr 20)

This is amazing news! WOW!

by LouiseS (Apr 16)

Thanks for the good wishes. Each time he has cut down by 10 mg he has felt such a difference so really hoping a cut to 40 will help a lot.
Unfortunately his doctor wants him to stay on 60 mg

by scuba (Apr 13)

Hi David,
And now for something completely different.
Taking dasatinib can be good for you apart from CML!
https://www.sciencedaily.com/releases/2019/01/190107112944.htm
https://www.

by David Fitz (Apr 13)

Scuba, this is my opinion too. The DESTINY trial supports this too - depth of molecular response isn’t good enough to predict successful TFR, time at depth is important too. So there’s
Category: Uncategorised

Replies: 7

Last updated: 20 April 2019