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scuba on 24 May 2018

Category: Uncategorised

Replies: 7

Last updated: 26 May 2018

I am very sad ...
by Romo (May 26)

Second hand Grill smoke.
Stand away from the Grill, eat the food, bad also.
Makes you want to give up on being serious.
Romo

by kat73 (May 25)

Justine - I read that, too. Very discouraging, but what can you do? Every yin has a yang.

by r06ue1 (May 25)

There are far more harmful chemicals in our environment (air, water, soil) and foods/beverages than you need to worry about from sausage, bacon and alcohol.

http://blog.

by Justine (May 25)

This is interesting too. Also not very happy. I'm not sure I understand macrophages.
https://www.theatlantic.com/magazine/archive/2018/05/barbara-ehrenreich-...
Category: Uncategorised

Replies: 7

Last updated: 26 May 2018
Adeola on 24 May 2018

Category: Treating CML

Replies: 2

Last updated: 25 May 2018

Swollen legs and ankle
by Adeola (May 25)

Thank you so much I will try that

by Tbrand (May 25)

I had this the first 3 months. Wore compression stockings which helped a lot as well as soaking in epson salt bath and then it was gone.

by Adeola (May 24)

help!! My legs and ankles are so swollen. I am on Gleevec is this normal? Anyone know the risen why and how to reduce swelling ?
Category: Treating CML

Replies: 2

Last updated: 25 May 2018
MJP on 23 May 2018

Category: Uncategorised

Replies: 7

Last updated: 24 May 2018

Hello and a question re: CML and total thyroidectomy
by MJP (May 24)

Quite Interesting.
As part of my treatment for thyroid cancer part of the protocol is TSH suppression. While I’m no longer kept below 0.5 (heart palpitations were a bit much) I’m

by kat73 (May 23)

I had a subtotal thyroidectomy for what turned out to be benign adenomas, in 1979. Like you, I was diagnosed with CML inadvertently, on a routine physical, in 2009. On Gleevec at first

by MJP (May 23)

The following may be of interest to you. There is a link at the bottom of the abstract to the full text.
Thyroid dysfunction caused by second-generation tyrosine kinase inhibitors in

by AlastairC (May 23)

Hi Mark, I'm in the UK diagnosed in 2007 so just past 11 years on imatinib, mainly on the standard 400mg dose but for the last 8 months on a reduced 200mg. Appointment next month to check I am still
Category: Uncategorised

Replies: 7

Last updated: 24 May 2018
Richd478 on 11 May 2018

Category: Treating CML

Replies: 4

Last updated: 23 May 2018

Dealing with CML
by Richd478 (May 23)

Thank you for your response. My doctor has noticed that for the first 7 years of gleevec my crestinine levels have been between 1.0 and 1.3, however, over the last month they have jumped to 1.54 and

by kat73 (May 12)

Sorry this took me awhile to respond to - I wanted to get some papers together. Yes, Gleevec can raise creatinine and tapdance on your eGFR. When it happened to me in 2010, there was

by David Fitz (May 11)

Alastair, you're absolutely right. The general consensus with clinicians that are leading in this field is that fathering a child on imatinib is safe. The jury is still out on other TKIs, but the

by AlastairC (May 11)

Rich, David knows more about this than I do, but there have been several threads in the past on fathering children on imatinib, and the consensus is that it is not an issue, Much simpler than if a
Category: Treating CML

Replies: 4

Last updated: 23 May 2018
David Fitz on 22 May 2018

Category: Uncategorised

Replies: 0

Last updated: 22 September 2018

New joiners: your account must be verified before you can post messages
by David Fitz (May 22)

Due to an increased level of spam on this forum I've had to take the step to validate new joiners to this group. I'm sorry I've had to do this, but the level of spam (particularly overnight when I
Category: Uncategorised

Replies: 0

Last updated: 22 September 2018
Lucas on 20 May 2018

Category: Uncategorised

Replies: 1

Last updated: 22 May 2018

tasigna's hair loss x minoxidil
by Romo (May 22)

Sad to say it’s not going to work.
Rogaind is topical and TKI’s are systemic.
Rogaind stimulates hair follicles on the top of
your skin and TKI’s kill cell reproduction under your skin.
I

by Lucas (May 20)

hey, guys! hope everyone is fine! a friend of mine has a doubt: she's a female on tasigna for a couple of years and she's having a huge hair loss. a dermatologist told her to use rogaine (minoxidil
Category: Uncategorised

Replies: 1

Last updated: 22 May 2018
Romo on 22 May 2018

Category: Uncategorised

Replies: 0

Last updated: 22 May 2018

We are Friends
by Romo (May 22)

My English friends.
My wife of over 30 years who is also my lovely
friend both watched the wedding of two wonderful people.
at Buckingham Palace and it was a great moment of good feelings.
Category: Uncategorised

Replies: 0

Last updated: 22 May 2018
Romo on 19 May 2018

Category: Uncategorised

Replies: 3

Last updated: 22 May 2018

Stranger than fiction
by Romo (May 22)

Of course I know that the whole thing is ridiculous.
But I’m not going to be one to tell the mice
no more Viagra!
All in fun
Romo

by scuba (May 20)

To Romo's multiple personalities ....
I sent the links one of you posted to an oncologist Ph.D. researcher friend of mine. He wrote back,
"suppressor cells are a clear issue in mice and have no

by Romo (May 19)

So Schizophrenic Romo #1 ask Schizophrenic Romo #2
“What the heck does this mousy test have to do with CML?”
Schizophrenic Romo #2 says:
“If you read the article you would have noticed that the

by Romo (May 19)

A mix of Viagra and Flu vaccine could treat cancer.
Bizarre cocktail is now being tested on humans
after reducing the disease by 90% in mice.
http://www.dailymail.co.uk/health/article-5746609/
Category: Uncategorised

Replies: 3

Last updated: 22 May 2018
grahamw on 17 May 2018

Category: Blood tests

Replies: 6

Last updated: 20 May 2018

Diagnosis of accelerated phase
by Lucas (May 20)

chin up, buddy! you should check for some interaction: food or drug (a lot of things can interact with tkis) and have a retest soon (and a mutation analysis), If you were in MMR3, maybe it's just a

by kat73 (May 20)

Graham - Don't give up! Why not switch to Sprycel? I call it the "kitchen sink TKI" because it covers more kinases than any other TKI - it's potent and short-lived, and smaller doses (like 50

by grahamw (May 19)

Hi Lucas,
My previous PCR was 0.1 and the ones before that were below 0.1 as per normal.
My last spike was about 4 years ago and was a singular peak. The consultant is
doing another test, so there

by grahamw (May 19)

Hi David,
Thanks for the swift response. If I'm honest I'd rather take whatever time I could
get with Imatinib, Tasigna looks a different ballgame. Do you know if health
trusts / Consultants
Category: Blood tests

Replies: 6

Last updated: 20 May 2018
bp3 on 17 April 2018

Category: Treating CML

Replies: 6

Last updated: 15 May 2018

pcr rising:Need Advice
by bp3 (May 15)

Received results yesterday.
BMB was a dry tap unfortunately, but the BCR-ABL test that they ran was .4 (down from 1.4).
Another BCR-ABL was ordered and as long as it checks out OK the plan is to

by bp3 (Apr 18)

Thanks, that will be done in a week or so with BMB.

by janlyn28 (Apr 18)

They did a mutations test on my son and did it through blood test. No biopsy done.

by David Fitz (Apr 17)

I agree with Scuba on this. Get a mutation analysis done - which requires a bone marrow biopsy (I think, in all cases). No big deal for the procedure, but it may help shine a light on the issue.
Category: Treating CML

Replies: 6

Last updated: 15 May 2018
Adeola on 11 May 2018

Category: Treating CML

Replies: 4

Last updated: 12 May 2018

Tinnitus and joint pains
by Adeola (May 12)

Oh wow so sorry about that teddy, I guess everyone’s body is different because I had tinnitus before starting glivec

by teddyb (May 12)

Hey.
I got tinnitus after starting Glivec.
At first it was really bad, but after a few months it got better, not sure if the tinnitus itself got better or that i just got used to it, but its no big

by Adeola (May 11)

Thank you so much David, yes I have friends and family who have been very supportive. I don’t know what I would have done without them

by David Fitz (May 11)

Hi there. That sounds pretty tough - a new CML diagnosis is hard to take. 23 is young - I was in my early thirties when diagnosed, so a bit older than you but not by that much. It's not something
Category: Treating CML

Replies: 4

Last updated: 12 May 2018
chigi on 26 April 2018

Category: Side effects

Replies: 8

Last updated: 11 May 2018

Pleural Effusions
by hannibellemo (May 11)

Hi, Scuba! Love this forum, don't you? Yes, my onc and I have talked about lowering to 20 mg., I just haven't pushed it since I feel pretty good right now. Testing at Mayo, where their sensitivity

by scuba (May 9)

Hannibellemo,
You might consider lowering your sprycel dose to 20 mg and reduce your P.E. risk further. Since you tested a mini-cessation of 3 months and learned after returning to Sprycel you

by hannibellemo (May 9)

Hi, I believe that Dr. Cortes says that a short course of corticosteroids may be attempted, but that a continuing course to control pleural effusions is not recommended. I found the short course to

by chigi (May 5)

Thank you so much! Great suggestions
Category: Side effects

Replies: 8

Last updated: 11 May 2018
mihir on 10 May 2018

Category: Uncategorised

Replies: 2

Last updated: 11 May 2018

A big thank you
by LouiseS (May 11)

I also want to echo Justine and send you love and best wishes that your journey from now on in will be easier. I hope that the anxiety of the last two years is lessening and that you are

by Justine (May 11)

Forgive me for this big American possible faux pas, but my heart goes out to you, lots of love and support and hope! All best to you!

by mihir (May 10)

I have been on this forum for a while, though not really contributing. Its been a blurred couple of years now. Diagnosis - confusion - accelerated - becoming a father two months into diagnosis -
Category: Uncategorised

Replies: 2

Last updated: 11 May 2018
Belladoo on 2 May 2018

Category: Treating CML

Replies: 7

Last updated: 10 May 2018

Hello! Help!
by LouiseS (May 10)

Thank you for taking the time to reply. Glad the news was better. I have never come across someone with such a high abr % at diagnosis. Neither wonder his red blood counts were / are so low and it’s

by Belladoo (May 10)

Hi Louise,
thank you for thinking of us.
Thankfully Tuesdays appointment was a bit more positive although I’m still worried. I got the doc to go through how stuffs been going and asked

by LouiseS (May 10)

Hi Belladoo
wondered how your husband's doctor's appointment went Tuesday ?
best, louise

by Belladoo (May 3)

Hi,
hubby is on standard dose only for a few days to push down numbers then they will decide what to do. That’s why he’s being retested tomorrow and Tuesday. Our usual Doctor had been away but
Category: Treating CML

Replies: 7

Last updated: 10 May 2018
Widgeonus on 9 May 2018

Category: Blood tests

Replies: 1

Last updated: 10 May 2018

Anyone ever have multiple tests with unobtainable results (MD Anderson) Trey or Scuba (if you're still on the boards)
by David Fitz (May 10)

Hi - you might find some of the content in section 3 & 4 (page 14+) from our PCR Booklet helpful in understanding why PCR tests can sometimes fail or be inaccurate.
You can find it here - just

by Widgeonus (May 9)

I had blood work on April 10th and the report came back "RNA is inadequate for BCR/ABL1 testing by PCR as judged by sub-optimal amplification of internal control". My doctor reordered the test and I
Category: Blood tests

Replies: 1

Last updated: 10 May 2018
pianogrl44 on 8 May 2018

Category: Uncategorised

Replies: 6

Last updated: 10 May 2018

Imatinib still best option?
by David Fitz (May 10)

Philip,
Perhaps it might be worth discussing dasatinib or bosutinib with your doctor? The side effect profiles are very different (dasatinib for me is much better than imatinib - but for some

by pianogrl44 (May 10)

Thanks so much for these comments, they’re really helpful! I had wondered about the plateau as well and whether I might have hit one. Sounds like I need to be patient and continue to be

by Philiptibbs (May 9)

I was on Gleevec and had a hard time with the bone pain so I switched to Tasigna and let me say I should have stayed on Gleevec because the side effects with Tasigna are way worse for at least me

by kat73 (May 8)

Piano Girl (me too!) - I would like to add to the other comments that it is very common to hit a plateau with these meds, and you're right about at the point where that often happens. We get
Category: Uncategorised

Replies: 6

Last updated: 10 May 2018
hannah2010 on 5 May 2018

Category: Uncategorised

Replies: 2

Last updated: 9 May 2018

Results
by hannibellemo (May 9)

Hi, Hannah, I know how you feel. I have my PCR done at the Mayo Clinic and they just lowered their sensitivity to .003 for BCR/ABL. My most recent report came back at <.003 and it was still

by David Fitz (May 5)

Hi Hannah,
I wouldn’t be distraught at all. 0.003% is MR4.5 - a really deep response.
There are several reasons why you may have got this result. It could even be as simple as an upgrade to

by hannah2010 (May 5)

Hi
thanks in advance for any replays. I am a 33 year old female who was diagnosed 8 years ago was on imatinib until 2015 then switched to nilotinib in 2015 since then I have been undetectable.
Category: Uncategorised

Replies: 2

Last updated: 9 May 2018
cmljax on 3 May 2018

Category: Uncategorised

Replies: 1

Last updated: 8 May 2018

CRISPR
by r06ue1 (May 8)

It is still in its infancy but they have had success in curing kids with ALL (still requires a transplant).

Eventually, as the technology and understanding improves, this will

by cmljax (May 3)

60 Minutes here in the US ran a story on this last Sunday and it sounded like the next great medical breakthrough, even for cancer. I would love to hear from the braniacs here whether or not
Category: Uncategorised

Replies: 1

Last updated: 8 May 2018
MartinZA on 2 May 2018

Category: Treating CML

Replies: 4

Last updated: 8 May 2018

Hello imatinib!
by pianogrl44 (May 8)

I’ve been on 400 mg of Imatinib since October 2015 and honestly, I have found the side effects quite minimal. I experienced the horrible bone pain people talk about for a couple weeks when I

by Justine (May 4)

Hi Martin, thanks for posting this. I have a few thoughts in response.
I've been on imatinib for about 13 months now after diagnosis April 2017. Unfortunately I do have the dreaded puffy eyes and

by LouiseS (May 4)

Hi Martin
just wanted to wish you best of luck on the new drug and thanks for sharing your feelings. I hope this next chapter is much less of a rough ride for you.
Also wanted to suggest you

by Tbrand (May 2)

Hi Martin, I have been on 600mg Gleevec for going on to 3 years now and feel great. No difference then before CML. I never read about the side effects, it’s all, “can” have. So don’t dwell on it. In
Category: Treating CML

Replies: 4

Last updated: 8 May 2018
Romo on 10 April 2018

Category: Uncategorised

Replies: 11

Last updated: 8 May 2018

I heard that people with CML have a sense of humor..
by Romo (May 8)

Guy walks into a bar and ask the Bar Tender,
“ Give me a beer before the trouble starts”.
The bar tender gives the beer.
The guy says,
“Give me another beer before the trouble starts”

by Justine (Apr 19)

Did you hear about the skeleton who didn’t go to the prom? He had no body to go with. He didn’t invite anyone because he didn’t have the guts.

by Romo (Apr 17)

Alligator or Crocodile,
you can distinguish an alligator from a crocodile
by paying attention to whether the animal sees
you later or in a while...
internet.

by Romo (Apr 15)

How do you Top a Car?
“You tep on the break tupid” ...

Romo
Category: Uncategorised

Replies: 11

Last updated: 8 May 2018