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angela on 16 April 2007

Category: Uncategorised

Replies: 7

Last updated: 6 October 2018

Dizziness
by Rebecca Bonnell (Oct 6)

Hi Dear BM Segelman i also have to wear hearing aids in both ears due to loss of hearing since being diagnosed which has got worse. I have been taken off Glivec and have been on a variety of other

by Rebecca Bonnell (Oct 6)

Hi Dear Angela, A few months back i was experiencing a dizzy type of problem when i went to lay down and turn over in bed and get up, this has since stopped. Now i have been experiencing for

by seggy (Apr 30)

B M Segelman

Taken off Gleevec-side affects, put on Hydroxycarbamide (Hydroxyurea).Side affects not as bad.Ocassional breathlessness,diziness,pain in shoulders,neck and sometimes both legs.

by angela (Apr 17)

Hi Kathy
Thanks for your reply. I've never had the dizziness before and I've had cml for since October 03 only since January this year. Oh well I hope it goes soon.
Take care, love Angela
Category: Uncategorised

Replies: 7

Last updated: 6 October 2018
argyleboy on 4 October 2018

Category: Uncategorised

Replies: 4

Last updated: 5 October 2018

Natural cures for CML/Blast Crisis
by r06ue1 (Oct 5)

So sorry for your loss. CML in blast crisis is incredibly hard to treat at this time, even after successful SCT it can come back.

With current technology, that was the only

by Poppert (Oct 4)

So very sorry for you.
Keep breathing. You did everything right.
Take care of your children. You must be strong now, for them.

by argyleboy (Oct 4)

Thanks, Alastair.

It's a comfort to me to know we did all we could.

by AlastairC (Oct 4)

Hi thanks for your posts. I'm extremely sorry to hear about your loss. F sounds like a wonderful person. It reminds those of us who are fortunate enough to have a good prognosis that we really are
Category: Uncategorised

Replies: 4

Last updated: 5 October 2018
Rick B on 1 October 2018

Category: Uncategorised

Replies: 3

Last updated: 4 October 2018

Imatinib - Stay the Course or Reduce Dosage?
by andycat (Oct 4)

Hello...If I was you I would keep on taking your meds. to a great extent the side affects become far less with time , + it is giving you a longer life. I have been on glivec 12year+

by Rick B (Oct 1)

Thanks for this. I will look at Clark's presentation and listen to your journey. Blessings!

by AlastairC (Oct 1)

Hi Rick, definitely too early I would say. Based on what Prof Clark said at the conference 10 days ago, you should aim to get below 0.1% PCR for a sustained period (probably several years) before

by Rick B (Oct 1)

I had my BMB on June 14th. My PCR score was 12.66%. They caught it early. I started 400 mg per day on July 5th. I just got my results for the BCR-ABL score for a September
Category: Uncategorised

Replies: 3

Last updated: 4 October 2018
argyleboy on 4 October 2018

Category: Uncategorised

Replies: 0

Last updated: 4 October 2018

CML death statistics
by argyleboy (Oct 4)

Hello,

Me again - I've posted below on natural cures for CML.
I've look ed at some stats recently. It seems as though only about 750 are diagnosed with CML in the UK per year and only about
Category: Uncategorised

Replies: 0

Last updated: 4 October 2018
Nimbus2 on 2 October 2018

Category: Uncategorised

Replies: 5

Last updated: 3 October 2018

CML and the immune system
by David Fitz (Oct 3)

I think you are right. The GP just heard “leukaemia” and wants to play it safe. My GP insisted I have a personalised action plan as a high risk patient. It’s totally unnecessary, and to be

by Nimbus2 (Oct 3)

Thank you, Alastair.
I think that the medics at the local surgery are thinking about leukaemia rather generically instead of understanding CML. Therefore their concern from the outset has been

by cmljax (Oct 3)

It is a great question. I was diagnosed 2 years ago and up til then had not had so much as a common cold for nearly 10 years and I have not had one since. When I began taking Tasigna,

by AlastairC (Oct 3)

Hi Justine. Yes I carry some ABs with me in case I need them, and have done since my neutropenia was identified 30 years ago, although I have not had to use them often. My wbc reduced further when I
Category: Uncategorised

Replies: 5

Last updated: 3 October 2018
Justine on 27 September 2018

Category: About CML

Replies: 7

Last updated: 2 October 2018

Article suggesting MPNs incl CML may be passed on to children
by Justine (Oct 2)

Thanks David. Hope all is well with the babies and their mom!

by David Fitz (Oct 2)

Full text here:
http://twin.sci-hub.tw/6987/1e68507247f2c28c0b1d457c9b4a890c/sud2018.pdf
David

by Justine (Oct 1)

Yes, Olivia, I have a cousin (my mother's sister's son) with MM and that's why I am wondering. Is this statistically unlikely? I don't know. Best wishes to all our offspring! Thanks!

by Justine (Oct 1)

Right, Poppert and Josiah, and that's what all the credible CML sources say, but this article made me nervous for my two grown sons. Maybe they should have regular blood tests just in case. But I
Category: About CML

Replies: 7

Last updated: 2 October 2018
gbatalha on 30 July 2018

Category: Blood tests

Replies: 15

Last updated: 1 October 2018

Imatinib apparent failure
by RC Kirk (Oct 1)

That's great news Gonzalo! Why did it take them so long to get your results to you? I can see why the two month wait was agonizing. Are you scheduled for another PCR test at your

by sandy craine (Oct 1)

Gonzalo, very good/wonderful news.. thank you for keeping this forum updated on your experience. I am sure you and your family are very much relieved and you can now see a future where you will

by AlastairC (Oct 1)

Gonzalo, Excellent news, delighted for you. Hope this puts your mind at rest.

Alastair

by gbatalha (Oct 1)

Dear all,
After two very long months I have finally received all the information from my bone marrow analysis (taken at 3/4 months).
Bone Marrow visual analysis - CML in remission
Mutation - None
Category: Blood tests

Replies: 15

Last updated: 1 October 2018
Poppert on 1 October 2018

Category: Treating CML

Replies: 0

Last updated: 1 October 2018

Nobel prize
by Poppert (Oct 1)

Apparently this year’s nobel prize in medicine goes to James P. Allison and Tasuku Honjo for their work on finding a way to ”unleash” the body’s immune system to attack cancer.
It
Category: Treating CML

Replies: 0

Last updated: 1 October 2018
MartinZA on 26 September 2018

Category: Getting help

Replies: 3

Last updated: 1 October 2018

Thank you - conference and cramping
by MartinZA (Oct 1)

Hi Sandy and David
Thanks so much for the answers and for the information! To answer your question, Sandy: I take my magnesium as part of a supplement called Opti-cal (it sounds like it

by sandy craine (Sep 27)

Hi Martin,
good to hear you sorted out the cramp problems with magnesium. Can I ask how much you take and in what form? It would be helpful for others to know and maybe try to deal with this side

by David Fitz (Sep 26)

That is great to hear Martin. I’m so pleased you found the video stream useful. Even better that Alastair managed to help you with your cramps problem - they are the worst! Together, we are able to

by MartinZA (Sep 26)

Hi everyone
First, I want to extend my sincere thanks for the live streaming of the CML patient conference this past weekend. It was such a privilege to be able to see these excellent
Category: Getting help

Replies: 3

Last updated: 1 October 2018
jason77 on 27 August 2018

Category: Blood tests

Replies: 10

Last updated: 1 October 2018

Rising FISH %
by Poppert (Oct 1)

Sounds like the right thing to do. I did a ”mutation analysis” too, I didn’t have to wait too long for the results. It seems your old doctor did a lot of strange things.

by jason77 (Sep 29)

Hey Scuba, He didnt prescribe a new med yet, wants the results first to make sure I dont have a T135 mutation. I asked about sprycel and he is receptive at starting on 70 mg and go from there. Thank

by scuba (Sep 29)

Did your new doctor start you on a new drug in the mean time?

by jason77 (Sep 28)

Saw the new Dr today and he has ordered a series of mutation tests and PCR. He was in disbelief that the old dr never tested for mutations or any follow up PCR since dx .I was dx last september and
Category: Blood tests

Replies: 10

Last updated: 1 October 2018
gautamjaiswal on 29 September 2018

Category: Children & young people

Replies: 1

Last updated: 30 September 2018

http://www.youngcmlforum.com
by Sid35 (Sep 30)

Thank you Mr. Jaiswal for sharing the information. I believe this new forum will help thousands of young cmrs in India. I am fascinated by how the members of cmlsupport.org support each other with

by gautamjaiswal (Sep 29)

Any friends from India, under the age of 40 years, who are suffering from CML can join the http://www.youngcmlforum.com forum to get their CML related queries answered. An initiative by R.P.
Category: Children & young people

Replies: 1

Last updated: 30 September 2018
chloe870 on 28 September 2018

Category: Treating CML

Replies: 0

Last updated: 28 September 2018

Bring Awareness to Blood Cancer
by chloe870 (Sep 28)

Hi everyone, I have recently been diagnosed with CML and was in complete shock for the first few weeks. I never knew much about blood cancer or the signs/symptoms. When I was waiting for my
Category: Treating CML

Replies: 0

Last updated: 28 September 2018
Karinne on 26 September 2018

Category: Uncategorised

Replies: 4

Last updated: 27 September 2018

PE is back....
by kat73 (Sep 27)

I have had a similar story to yours, Karinne. I've had several PE's, and I've never had any obvious symptoms with them. I could not stay off the Sprycel long enough to get COMPLETELY,

by sandy craine (Sep 27)

Bosutinib is popular amongst CML clinicians here in the UK due to its efficacy as well as its side effect profile. That is not to say it does not have the potential for serious side effects, but it

by Karinne (Sep 26)

Thanks David. Do you have infos on Bosutinib?

by David Fitz (Sep 26)

Hi Karinne,
It sounds like you have had a tough time. To me, this sounds like you should switch - your PCR is excellent. Why not bosutinib? It seems to have a lower side effect profile than
Category: Uncategorised

Replies: 4

Last updated: 27 September 2018
Olivia on 26 September 2018

Category: Uncategorised

Replies: 3

Last updated: 27 September 2018

Make blood cancer visible
by J. HY Wong (Sep 27)

It is nice to hear patients in the UK could be well supported, I sure hope HK could renew its medicine regime ASAP and include 2nd generation TKI into its public healthcare system. Taxes are

by sandy craine (Sep 27)

UK patients do not have to pay for healthcare at the 'point of need'. So we, as CML patients are very fortunate not to have to pay for expensive TKI therapy or any other treatment. We do have a

by J. HY Wong (Sep 27)

Just wondering, how CML patients are treated, in terms of social benefits, in the UK? Sprycel is utterly expensive and is not fully covered in Hong Kong's public medical services, I am planning to

by Olivia (Sep 26)

Yesterday I went to the installation, which some of you may have read about, made by the Make Blood Cancer Visible organisation. It is very well sited in Edinburgh, just next to Princes Street
Category: Uncategorised

Replies: 3

Last updated: 27 September 2018
ramesh kadaru on 27 September 2018

Category: Treating CML

Replies: 1

Last updated: 27 September 2018

BCR-ABL1IS-QUANTITATIVE TEST RESULT
by sandy craine (Sep 27)

Hi Ramesh,
I have some questions:
Given your father has had CML for 25years, can I ask how he has been treated before he was given imatinib (6 months back)?
I assume the PCR test result you quote as

by ramesh kadaru (Sep 27)

Hi My Dad was diagnosed CML 25 years back, he is now 73 years old. He was using Imatinib 6 months back and during the BCR-ABL1IS-QUANTITATIVE TEST RESULT BCR-ABL1 IS -NCN
Category: Treating CML

Replies: 1

Last updated: 27 September 2018
jriccoboni on 26 September 2018

Category: Treating CML

Replies: 7

Last updated: 27 September 2018

PCR test after 1 month of treatment
by sandy craine (Sep 27)

Give yourself and your body some time. You only started therapy 4 months ago and looks like your response is good, so you can at least comfort yourself with the knowledge that you have responsive

by J. HY Wong (Sep 27)

50mg, I have started on 100mg, but because of the immunosuppression my doctor authorized me with 50mg -- and I keep taking 50 to this date. I have been keeping up the exercises, but still not

by scuba (Sep 27)

What dose are you on currently?

by J. HY Wong (Sep 27)

I started four months ago and I got 6% after two months, I think you are in great shape. But even sprycel 50mg is still causing fatigue, I wonder if 20mg could work.
Category: Treating CML

Replies: 7

Last updated: 27 September 2018
autadesiddharth on 21 September 2018

Category: Treating CML

Replies: 1

Last updated: 26 September 2018

Managing thrombocytopenia
by David Fitz (Sep 26)

Hi there,
I’m really sorry nobody has been able to give you any good answers. Food and blood counts are really not that related. We’d all like to earn some special food to boost our blood

by autadesiddharth (Sep 21)

My mother has been in the Blast Crisis for 6 months now. She was currently taking 50mg Dasatinib on an alternate day after few rounds of chemotherapy failed to get her into remission.
She has also
Category: Treating CML

Replies: 1

Last updated: 26 September 2018
hannah2010 on 21 September 2018

Category: Uncategorised

Replies: 3

Last updated: 26 September 2018

Unsure what to do
by sandy craine (Sep 26)

Dear Hannah,
Firstly, congratualtions on your pregnancy. I am not sure if you are treated here in the UK, but you are right to question the 'locum consultant" and his rather unsympathetic

by hannah2010 (Sep 22)

Hi martha
thanks for your reply, may I ask what your bcr abl levels did whilst off the treatment?

Hannah

by Martha Stuart-Berrisford (Sep 21)

Hi Hannah,

Congratulations on your pregnancy. I have had CML for 10 years now and had three pregnancies since. I managed to have two of my children at full term, 42weeks and breastfeeding

by hannah2010 (Sep 21)

Hi
you may have read my post back in June regarding pregnancy and that I had dropped my nilotinib in may this year.
i am currently nearly 23 weeks pregnant now, but received a call from a locum
Category: Uncategorised

Replies: 3

Last updated: 26 September 2018
DawnD on 21 September 2018

Category: Uncategorised

Replies: 4

Last updated: 24 September 2018

So let the ride begin?
by DawnD (Sep 24)

I can’t thank you enough Scuba. I am learning quickly. I am gonna tell the hemotogist about you and Dr Cortes and see what she says. I am ready to do the 20 mg. I may need a second opinion if she is

by scuba (Sep 24)

Dawn,
Actually - I have a suspicion that Sprycel is going to work excellent for you. But you need to start back with a much lower dose. I was on / off/ on Sprycel until my blood counts stabilized.

by DawnD (Sep 24)

Thanks Phillip . I so appreciate your reply.

by Philiptibbs (Sep 23)

Keep your head high and never give up. Maybe try Gleevec . I've tried Gleevec , Sprycel and Tasigna and Gleevec has less side effects for me. It might work for you too. Ask your Oncologist his
Category: Uncategorised

Replies: 4

Last updated: 24 September 2018
Mike1523 on 24 September 2018

Category: Side effects

Replies: 1

Last updated: 24 September 2018

imatinib side effects
by sandy craine (Sep 24)

Hi Mike and welcome,
You describe a set of side effects that many of us have experienced from imatinib. I am not confident in suggesting you lower your dose as I do not know how your particular

by Mike1523 (Sep 24)

I don't have CML but I am told it is rare but similar to it. I have been diagnosed with a condition called myeloproliferative neoplasm with a PDGRFRB rearrangement. My condition responds very well
Category: Side effects

Replies: 1

Last updated: 24 September 2018