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Chronic myeloid leukemia and pregnancy: patient and partner perspectives

CML patients with deep molecular responses to TKI have restored immune effectors and decreased PD-1 and immune suppressors

Early Results of Lower Dose Dasatinib (50 mg Daily) as Frontline Therapy

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David Fitz on 22 May 2018

Category: Uncategorised

Replies: 1

Last updated: 18 July 2018

PinnedNew 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: 1

Last updated: 18 July 2018
W Mann on 14 August 2018

Category: Side effects

Replies: 2

Last updated: 15 August 2018

CML since 2005, Suffering from Bone Pain ever since
by LouiseS (Aug 15)

I am so sorry to hear about the bone pain Wendy.I hope that a reduction in dose , maybe to 20 mg will help ?sandy suggested to me once for my husband that magnesium can help with bone pain , and you

by W Mann (Aug 14)

Hello, I am new to your forum and was wondering if anyone else has suffered from severe bone pain while taking any of the TKI's. I was dx July 2005 and initally started on imatanib 600 mg (can'
Category: Side effects

Replies: 2

Last updated: 15 August 2018
DawnD on 14 August 2018

Category: Blood tests

Replies: 13

Last updated: 15 August 2018

WBC level at diagnoses
by LouiseS (Aug 15)

My husband’s was at 200,000. The on call doctor called in a panic with his results and said go to the hospital immediately if you feel unwell. I spent the weekend googling WBC 200,000 looking for a

by RC Kirk (Aug 15)

45.8 then 4 days later 48.4 and then 10 days later it was up to 65.5 right before I started Gleevec. Three weeks later it was down to 5.4.

by DawnD (Aug 15)

Very interesting Nimbus. Love the little comments after the levels:)

by DawnD (Aug 15)

Thanks for all the replies. There certainly is a wide range!! Been on Sprycel for almost a week. Mine initially was around 30,000.
Category: Blood tests

Replies: 13

Last updated: 15 August 2018
Fritz on 6 August 2018

Category: Children & young people

Replies: 2

Last updated: 15 August 2018

Introduction
by DawnD (Aug 15)

Hi Fritz, Welcome. I am new too and still learning a lot. :) Wishing you well!! Cheers , Dawn

by Fritz (Aug 6)

Hi folks! this is my very first post to this site. Wishing anyone who reads this a better day tomorrow!!!I am responding to the comment about "low dose radiation tied to higher leukemia
Category: Children & young people

Replies: 2

Last updated: 15 August 2018
Toml on 9 August 2018

Category: Treating CML

Replies: 10

Last updated: 15 August 2018

Help!! PAH and Sprycel onc recommends switch to tasigna
by Toml (Aug 15)

Thanks Sandy. I just started the tasigna but will speak to onc re Bostunib. That sounds like a good option for me since I have had PAH. Perhaps my “plan B” if tasigna doesn’t do the

by sandy craine (Aug 14)

Bostunib (Bosulif) may be an answer for you. You could ask your oncologist. UK CML clinicians- amongst others - are positive about this TKI as a good alternative to nilotinib/dasatinib/ponatiib re:

by alison (Aug 12)

You may want to discuss lower starting dose or reducing once your numbers are good enough.

by Toml (Aug 11)

Thanks. Sorry for the confusion re dosage.... I am prescribed 600mg/day (300 x2). I very nervous of the potential side effects of tasigna but feel it is the right choice all things
Category: Treating CML

Replies: 10

Last updated: 15 August 2018
gautamjaiswal on 14 August 2018

Category: Other conditions

Replies: 3

Last updated: 15 August 2018

Weight Loss
by Tbrand (Aug 15)

After a while the pounds will pack back on without diet/exercise just like Motto Motto.

by alexmcpee (Aug 14)

HiI lost a fair amount of weight post DX and was one of the things my family kept saying to me and one of the reasons that prompted me to get checked out. I was diagnosed in March and put on

by gautamjaiswal (Aug 14)

Hi,I am on Glivac 400mg since the last 2 months. My WBC count is now within range. I regularly experience weakness in my legs with cramps and intermittent pain. Moreover, I am loosing weight
Category: Other conditions

Replies: 3

Last updated: 15 August 2018
Stacey Doubblestein on 10 August 2018

Category: About CML

Replies: 6

Last updated: 14 August 2018

Any Vetrans with CML?
by Stacey Doubblestein (Aug 14)

-CML can be caused by radiation several men in my husband's Army unit have been diagnosed with some type of blood cancer in the past year

by chevyflame (Aug 11)

ATSDR is concerned about the health effects of exposures to chemicals found in the drinking water at Camp Lejeune. Before 1986, drinking water from the Tarawa Terrace and Hadnot Point treatment

by chevyflame (Aug 11)

Please review this article from USMC Camp Lejeune. I will post another article which lists chemicals involved. March 17, 2017JACKSONVILLE, N.C. (WITN) - Tuesday is the day Camp Lejeune Marines

by Romo (Aug 11)

CML is a genetic malfunction.None of us are perfect humans.With no defects. CML happens.If we were perfect we would beSupermen and Superwoman.and nobody would fix our stuff.Because they would
Category: About CML

Replies: 6

Last updated: 14 August 2018
anonimouse on 14 February 2018

Category: Treating CML

Replies: 30

Last updated: 14 August 2018

Has anybody been able to reduce their dosage of Sprycel?
by scuba (Aug 14)

"He says if we go too low, I could develop resistance just like we do with antibiotics."Your doctor is mis-informed. There is no such thing as "resistance like antibiotic resistance" in cancer.

by Mike2584 (Aug 14)

What do you guys think of dosage reduction with history of BCR-ABL mutation ?I’m in MMR 4.5 with 100 mg of Sprycel since 1 year my Haematologist says it’s not safeCheers Mike

by Chuckster (Aug 14)

Yes, I have been able to reduce the dosage of Sprycel.Diagnosed with CML Feb 2018.I started out with 100MG daily- ( March 2018) and it was miserable regarding side-effectsI had had enough after

by W Mann (Aug 14)

I have been on Sprycel 50mg for 11 years (was diagnosed in July 2005 and Gleevec was first med I was on, it stopped working). I have been in undetectable for 10 years so there should be no
Category: Treating CML

Replies: 30

Last updated: 14 August 2018
Clarek on 30 July 2018

Category: Treating CML

Replies: 6

Last updated: 14 August 2018

BCR results
by David Fitz (Aug 14)

Hi Clare, One set of targets which is often discussed as a good indicator is reaching 10% by 3 months. Then 1% at 6 months, and 0.1% by 12 months. These would be considered "optimal" responses.

by ColoradoGuy (Aug 14)

I would say as long as you are trending in the right direction you are still good. Mine looked like the following:64%, 23% (6 months), 1.8% (9 months), 12 month at the end of this month.

by Clarek (Aug 14)

Hi,I asked about my PCR tests and apparently I've had 3. The results of the 1st one in February was 82%, then May was 22% and this months went down to 2.4%, and I still don't know if this is ok.

by David Fitz (Jul 30)

Hi Clare, It's common not to have a PCR test (which tests for the existence of BCR-Abl, the fusion protein that drives CML) until 3 months after diagnosis. However, that means you ought to have
Category: Treating CML

Replies: 6

Last updated: 14 August 2018
scuba on 4 May 2018

Category: Uncategorised

Replies: 20

Last updated: 14 August 2018

Could Fasting + TKI 'cure' CML?
by tom888 (Aug 14)

Very informative dear scuba. I accidentally found a study about Feverfew. It contains a substance called parthenolide . parthenolide may kill leukemic stem cells according to the following study:

by scuba (Aug 12)

During fasting very little if anything is renewed - stem cells are quiescent. The body is conserving, recycling and clearing.Upon re-feeding, the presence of food in the system triggers hormones with

by tom888 (Aug 12)

Very interesting article you gave. What I did not understand is if with fasting only the HSCs are renewed; With LSC what's going on? Can the number of LSCs be reduced only with fasting? Without the

by scuba (Aug 12)

Tom,You absolutely should be drinking water during a fast! Water is vital for life every day. In fact, during a fast you should be drinking more water - a glass an hour if one remembers, but
Category: Uncategorised

Replies: 20

Last updated: 14 August 2018
Nana Simone on 11 August 2018

Category: Uncategorised

Replies: 8

Last updated: 14 August 2018

Working whilst on sprycel
by sandy craine (Aug 14)

Nancy- welcome to this forum. You will find support and solace here.On 22nd September (which this year coincides with World CML Day) there is a National UK CML patient meeting in Birmingham, UK. If

by LouiseS (Aug 12)

Hi Nancy I am glad you plucked up the courage to post. The first time is hard! My husband is the one with CML and he is coming up on a year of being diagnosed. I think your roller coaster

by onekayaker (Aug 12)

Welcome Nana,I was just diagnosed recently and in my first week of sprycel 100mg. My hardest time is night. Since I am new to this I am not able to recommend much at this

by Nana Simone (Aug 12)

You’re making the dead weight I’m carrying a bit lighter, my relatives and friends make me feel like I’m exaggerating, that I should be doing more because I physically look fine. I just don’t have
Category: Uncategorised

Replies: 8

Last updated: 14 August 2018
Trevorp93 on 12 August 2018

Category: Treating CML

Replies: 5

Last updated: 13 August 2018

Sprycel 100mg Help with returning of an a eye floater
by Gitel (Aug 13)

How common this is with CML I do not know. Ask your Onc, but do see an ophthalmologist who knows about the retina. Floaters do appear when the ball of fluid in your eye separates from the retina. In

by Trevorp93 (Aug 13)

Hi everyone thanks for getting back to me on this. I went to the emergency room for this and they recently told them that this was a vitreous hemorrhag. I was trying to see if anyone has gone though

by David Fitz (Aug 13)

Hi Gitel,It sounds like I had similar problems to you. CML made me lose quite a lot of eyesight - I couldn't see things in the centre of my vision very well. For example, I could not read text on a

by Gitel (Aug 13)

I thought eye floaters were related to the retina. When I had them, and they stayed, I was sent to an ophthalmologist who found I had a slight tear in the retina. part of aging. They had healed.
Category: Treating CML

Replies: 5

Last updated: 13 August 2018
rosegunton on 27 July 2018

Category: Uncategorised

Replies: 9

Last updated: 13 August 2018

CML Birmingham Support Group
by Nimbus2 (Aug 13)

Thank you for arranging Saturday's support group meeting.Joanne Mason's excellent presentation answered many questions that were floating around in my mind. I took the advice of the participants

by Nimbus2 (Aug 2)

Almost every little boy or girl can join Facebook without issue, but a 62-year-old man with CML is locked out. It is impossible to communicate with these people. They even have a copy of a

by David Fitz (Jul 30)

Hi Stephen, I had this same experience when signing up to Facebook. A right pain. Worth persisting though, eventually it did all work and I never had a log on issue since. I still don't quite know

by Nimbus2 (Jul 30)

I am locked out of Facebook again ("unusual activity on your account") and near the point of giving up. I have sent then yet another photograph. Third attempt!
Category: Uncategorised

Replies: 9

Last updated: 13 August 2018
sg3 on 12 August 2018

Category: Children & young people

Replies: 3

Last updated: 13 August 2018

Bcr-abl results <.01%
by RC Kirk (Aug 13)

It took me over five years to get to that level. My doctor was concerned when I didn't reach 0.1% after one year of treatment. But my BCR-ABL level has been a mostly downward trend since

by Nana Simone (Aug 12)

Hey!I recently started dasatinibg (September), and in November I was told my bcr-abl results reached >0.2% un two months. That it usually takes a year and that my results were almost miraculous.

by sg3 (Aug 12)

How long has it taken people to reach this target? My friend was diagnosed April 2016 and started on imatinib. In the Nov was told was it wasn't working well enough and switched to nilotinib jan
Category: Children & young people

Replies: 3

Last updated: 13 August 2018
Stacey Doubblestein on 8 August 2018

Category: Children & young people

Replies: 8

Last updated: 11 August 2018

First FISH results
by David Fitz (Aug 11)

The Emperor of all Maladies is fascinating. I read it when I was diagnosed with CML, just to understand cancer better. Came as a total shock to find the book opens with CML! Really well written book

by kat73 (Aug 11)

Great book. Also read The Emperor of All Maladies (there's some CML overlap). Big fat book but a swift read - fantastic.

by Stacey Doubblestein (Aug 10)

I listened to the Audible book The Philidelphia Chromosome it is amazing how they figured this out and how lucky the newly diagnosed wont suffer as much as those before

by Stacey Doubblestein (Aug 10)

Thank you so very much - we feel so much more at ease now
Category: Children & young people

Replies: 8

Last updated: 11 August 2018
Justine on 3 August 2018

Category: Blood tests

Replies: 26

Last updated: 11 August 2018

Amazing PCR result
by Gitel (Aug 11)

Of course it makes more sense to have the BCR ABL available when one sees the Onc at the three month visits. That’s how I learned I was Imatinib resistant and needed To be checked for mutations

by kat73 (Aug 10)

Yes, Gitel, I have indeed spoken up! I went up the chain of command to the top of IT. They assured me that everyone in the higher administration was aware of the problem and trying to fix

by Gitel (Aug 10)

Kat73, not good about the professional patient communication as you describe the Johns Hopkins system. I am at Mayo and get results on the on line patient portal as soon as my Onc does. They

by cmljax (Aug 10)

Hang in there Justine. You might very well have to graduate to Tasigna or Sprycell, so you still have a lot of bullets in the chamber - Dr. Drucker will take you in the right direction.Kat73 -
Category: Blood tests

Replies: 26

Last updated: 11 August 2018
alison on 6 August 2018

Category: Treating CML

Replies: 3

Last updated: 11 August 2018

May switch to Bosulif -- Advice please
by Mike B (Aug 11)

Bosutinib is a powerful TKI. The 100mg dose seems low. I was on it for a while at a starting dosage of 400mg and felt good. But had to change off it recently due to my liver enzymes (ALT/AST) being

by alison (Aug 10)

TTT this was posted right before the forum went offline for a day or two, so hoping may get some responses.UPDATE: He will start on 100 mg Bosulif and perhaps titrate up, NOT on 300 mg as

by alison (Aug 6)

My husband has been on 4-month drug holiday from Sprycel 50 mg due to shortness of breath. Because SOB has diminished but not gone away entirely, he will likely switch to 300 mg Bosulif if/when
Category: Treating CML

Replies: 3

Last updated: 11 August 2018
onekayaker on 9 August 2018

Category: Uncategorised

Replies: 23

Last updated: 11 August 2018

Newly diagnosed and looking for feedback on first few days taking tki pills
by scuba (Aug 11)

Thanks David!

by David Fitz (Aug 10)

Private messaging coming soon ... it's on the list of top priorities (after better spam management!).David.

by scuba (Aug 10)

One Kayacker,I don't believe this forum has a private message mechanism. I would not post your email address here. Perhaps David has a way.Why are you waiting 30 days before taking vitamin D3?

by onekayaker (Aug 10)

Scuba,i did send a message to my leukemia doctor about the D3(learned this from your post). Wanting to wait 30 days before I go on that. When I joined I allowed people able to email me
Category: Uncategorised

Replies: 23

Last updated: 11 August 2018
Nimbus2 on 7 August 2018

Category: Uncategorised

Replies: 6

Last updated: 10 August 2018

Full Blood Count and IG
by Nimbus2 (Aug 10)

The doctor did mention this, Kat73, and you are quite right. I was commenting upon the Full Blood Count (FBC), but the doctor did mention that my Kidney function was slightly impaired. The blood

by kat73 (Aug 10)

You do, however, need to also keep an eye on some of the numbers on your CMP (Complete Metabolic Panel) which should be done every time you have the CBC done. Like: creatinine, BUN and

by Nimbus2 (Aug 10)

I now have some answers from the doctor. I am told that the automated instant FBC measurement machine typically fails to register BASO when the white blood count is high. The IG figure is of no

by Nimbus2 (Aug 9)

This was the answer that I could not Google satisfactorily. Thank you, David. Looking back through my blood history, the Basophil count was the first thing to go wildly wrong (even before
Category: Uncategorised

Replies: 6

Last updated: 10 August 2018
Libby on 10 August 2018

Category: Uncategorised

Replies: 2

Last updated: 10 August 2018

Dasatinib
by Gitel (Aug 10)

My blood pressure has remained the same through Imatinib and dasatinib, except of course when I am riled up. However, in all routine testing it has remained about 125/70. I do not have an

by Libby (Aug 10)

I am on 100 dasatinib. I’ve noticed over the last few weeks that my blood pressure has risen to a high level (160/90). Is this normal for dasatinib - I’ve been on it since diagnosis 9 months
Category: Uncategorised

Replies: 2

Last updated: 10 August 2018