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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
Francisco Estévez on 29 April 2018

Category: Side effects

Replies: 21

Last updated: 7 May 2018

Starting Treatment Monday! What can I expect?
by Philiptibbs (May 7)

I'm not happy that you have the same side effects as me but it makes me feel like I'm not alone and not crazy. I may try Sprycel if I can't get the side effects from Tasigna to subside just a little

by tiredblood (May 6)

Actually, my experience with Tasigna and Gleevec have been very similar to Philip’ as listed in his original post. I appreciate Philip’s input as it resonates with my own experience. It has been my

by Philiptibbs (May 3)

Thank you so much for the info. I highly appreciate it and will start taking the magnesium and D3 and the Curcumin . I would love for half the pain to go away so I can get off these terrible pain

by Philiptibbs (May 3)

I wish I lived by you so I could come talk with you. My wife said I need to talk with people who have Leukemia and that it would help me and it does. You are such a very nice woman and thank you for
Category: Side effects

Replies: 21

Last updated: 7 May 2018
Nuttyma25 on 1 May 2018

Category: Treating CML

Replies: 1

Last updated: 5 May 2018

Pancytopenia and Nilotinib
by sandy craine (May 5)

Please try not to worry too much about whether this is signs of worsening CML or some other cancer etc. It is more than likely to be due to drug toxicity. Your PCR was pretty much in the

by Nuttyma25 (May 1)

I am a 51 year old female diagnosed with CML in the Chronic phase in January of 2017. I feel certain it was a result of radioactive iodine treatments that I had for thyroid cancer six years ago.
I
Category: Treating CML

Replies: 1

Last updated: 5 May 2018
Fillette on 30 April 2018

Category: Getting help

Replies: 8

Last updated: 3 May 2018

Help with Nilotinib
by sandy craine (May 3)

I am really glad that Max Foundation can help you get access and support your case. They do good work in areas where there is limited access to TKIs. I hope nilotinib is the answer for you.

by Fillette (May 1)

Dear Sandy,
Thanks alot!.
I am now in touch with the Max foundation and they are incredibly helpful. There is a hope they can ship the drugs to Rwanda for me. I am very grateful.
Cheers,

by cmljax (May 1)

I would get each doctor to fully explain the reasons for their recommendations. There may be something from one or both of them that you do not know yet.
As a layperson with this disease, I have

by Fillette (May 1)

Hi there,
Thanks alot for your response,
I am in Chronic Phase. I have done the bone marrow biopsy and the doctor didn't mention any abnormal mutations.
I have realised that people have different
Category: Getting help

Replies: 8

Last updated: 3 May 2018
LouiseS on 2 May 2018

Category: Uncategorised

Replies: 2

Last updated: 3 May 2018

Disappointing blood test results
by LouiseS (May 3)

Thank you for the reply. I was most worried about the WBC and RBC morphology no longer being listed as normal but showing signs of ovalcytes etc as it hasn’t shown this for last several tests

by cmljax (May 2)

Louise:
I'd wait for the PCR before assuming it will be worse based on the CBC results. While the CBC results you mention are different, they are not really all that worrisome. My wbc has

by LouiseS (May 2)

Hi there, appreciate your feedback and support. My husband just got his blood results back one month after reducing his dose of dasatinib from 100 to 50. Looks like the its had an immediate negative
Category: Uncategorised

Replies: 2

Last updated: 3 May 2018
dagreen1971 on 24 April 2018

Category: Side effects

Replies: 4

Last updated: 2 May 2018

Tasigna side affect
by Philiptibbs (May 2)

Expect to have gas all day and night. I drink enough water to drown a Horse and it does nothing but make me pee all day and all night. I tell my Wife there are barking Spiders in the house and

by cmljax (Apr 24)

Hi Dave: I am also on Tasigna - started om 600 mg/day and now down to 150 mg/day. I used to have your problem primarily after I ate and here's a list of the things I tried and that seemed to

by David Fitz (Apr 24)

The NHS has some good guidance on this topic here:
https://www.nhs.uk/conditions/flatulence/
Some of the suggestions it makes are to try drinking peppermint tea. Activated charcoal tablets

by AlastairC (Apr 24)

Dave, the flatulence issue is well known to the many members of this forum. There is an old set of posts on this subject here which has some comments on what people use, and some humour which
Category: Side effects

Replies: 4

Last updated: 2 May 2018
Dona_B on 1 May 2018

Category: Uncategorised

Replies: 1

Last updated: 1 May 2018

Thyroid and/or Adrenal Fatigue
by sandy craine (May 1)

HI Dona,
low thyroid issues can be a problem... even without TKI therapy added to the mix. You might want to get your T3 levels tested which may be a better indication of hypothyroidism. I think

by Dona_B (May 1)

Hello,

First off, thank you for saving all 200 some pages from the old American forum that closed. I was on page 60 something looking for thyroid/adrenal fatigue articles. Found a few thyroid
Category: Uncategorised

Replies: 1

Last updated: 1 May 2018