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Saraberkenkotter on 10 March 2018

Category: Side effects

Replies: 3

Last updated: 11 March 2018

Awful headaches
by hannibellemo (Mar 11)

Hi, Sara!
You are having a time of it aren't you? I've been taking Sprycel since 2009 and while I hated it at first, after 6 months or so I started feeling so much better. I don't think what you are

by Romo (Mar 10)

Water retention and gaining 20 pounds, could mean something.
These things coupled with shortness of breath may mean
that you are having toxicity to the dasitnib. I hope you are seeing
a

by LouiseS (Mar 10)

Hi Sara

My husband was only diagnosed last Sept and has been on Sprycel since then at 100mg. There are others on this site way more experienced to offer advice than me but from what I have

by Saraberkenkotter (Mar 10)

Help!!

I am taking sprycel (desatinb) and have only, uuntil recently, had minimal side effects such as water retention and skin rash. But lately it has been getting so much worse! I wake up
Category: Side effects

Replies: 3

Last updated: 11 March 2018
EvaH on 10 March 2018

Category: Drug-food interactions

Replies: 1

Last updated: 11 March 2018

Tki's And herbal medicine
by sandy craine (Mar 11)

Hi Eva,
There are a lot of people suffering this at the moment - at least in the UK. I work in the retail environment so I am exposed daily to the flu virus etc. However, this year I have escaped

by EvaH (Mar 10)

Hi all,
A friend suggested kaloba for my chesty cough. Can't seem to find any info online about interaction with Imatanib.
Generally , does anyone know of a reference on tki's and herbal meds? ( In
Category: Drug-food interactions

Replies: 1

Last updated: 11 March 2018
Watersprite3 on 10 March 2018

Category: Uncategorised

Replies: 1

Last updated: 11 March 2018

New to forum
by sandy craine (Mar 11)

Hello Eileen and welcome,
Looks like you are within ELNet recommendations for optimal response to TKI therapy, and NCCN (US) guidelines. Your October and January PCR results show you are

by Watersprite3 (Mar 10)

I am new to this forum, and have jumped over the pond from the US site. Two years ago, I was diagnosed with colon cancer and went through surgery followed by chemotherapy. I have a few
Category: Uncategorised

Replies: 1

Last updated: 11 March 2018
scuba on 30 January 2018

Category: Uncategorised

Replies: 68

Last updated: 10 March 2018

Coming over from LLS CML group in the U.S.
by Romo (Mar 10)

After thought...
I have friends that put toothpaste in their coffee and call it brushing their teeth.
Just trying to have some fun.

Romo

by Romo (Mar 10)

I hope our English host don’t mind us Americans
invading their CML domain.
We promise not to drink the tea. We are coffee people.
Lotsa cream. lotsa sugar and anything else you have.
Thank

by snowboots (Mar 10)

Hi Scuba and All! So glad to see you here. I am also just coming over from the US LLS site. So dissappointed in their dumping of our discussion group. I am already liking this one! Hoping to

by scuba (Mar 9)

I'm not so sure David about equal members ... according to George Orwell, that famous English novelist, didn't he say that some members were more equal than others?
Category: Uncategorised

Replies: 68

Last updated: 10 March 2018
LouiseS on 8 March 2018

Category: Uncategorised

Replies: 4

Last updated: 9 March 2018

Antihistamine
by Romo (Mar 9)

Many allergies in the eye are caused by allergens trapped in the eye lashes
during the day and migrate to the eye orb during the day or night.
Eye lashes are a filter to protect the eye.
An

by David Fitz (Mar 8)

Hi Louise,
I often get dry eyes - not CML related, just always have. I have recently found carmellose sodium drops to be great at relieving that dry feeling. Really soothing.
https://

by LouiseS (Mar 8)

Thanks so much for such a speedy reply. I will get some today and keep you posted.

by scuba (Mar 8)

It's almost certainly hay fever.
Quercetin is terrific at countering itchy swollen eyes. It is a natural anti-histamine
https://www.healthline.com/health/allergies/best-natural-antihistamines#1
When
Category: Uncategorised

Replies: 4

Last updated: 9 March 2018
laxmikant on 2 March 2018

Category: Blood tests

Replies: 6

Last updated: 8 March 2018

A question about PCR result interpretation
by laxmikant (Mar 8)

Nice to hear the same Romo. Thanks

by laxmikant (Mar 8)

Thanks and I wish speedy response for your husband too. Best

by laxmikant (Mar 8)

Thanks AlastairC, that was very reassuring. Yes I suffered from a few side effects initially like muscle cramps and digestive disturbances etc. But after six months they disappeared. I hope they do

by T and M (Mar 7)

Hi Laxmikant. Looks like your result is really fantastic. My husband is on Imatinib and started at 90% myeloid cells and by 4 months was 6.06%. Sometimes too good of a response
Category: Blood tests

Replies: 6

Last updated: 8 March 2018
Carolinemb on 8 March 2018

Category: Drug-food interactions

Replies: 1

Last updated: 8 March 2018

Vitamin supplements on TKIs
by scuba (Mar 8)

Hi Caroline,
It's generally safe to take vitamins and minerals with TKI's, but usually if you have a deficiency that needs to be corrected. Herbs are more case by case as you noted with St. John's

by Carolinemb (Mar 8)

Hi everyone,
I’m a bit confused as to what vitamin supplements we are allowed to take on TKIs? (I’m on imatinib)
There seems to be a lot of conflicting info out there, I know weve definitely
Category: Drug-food interactions

Replies: 1

Last updated: 8 March 2018
MartinZA on 6 March 2018

Category: Treating CML

Replies: 3

Last updated: 8 March 2018

Hope for those with slow responses
by Lucas (Mar 8)

Amazing, Martin!!! I'm really glad to read good news! I know that your journey wasn't easy (just like mine). If i were you, i would wait for the next pcr to change to imatinib, but i think you'll be

by JohnFromChicago (Mar 7)

Wow I almost have the exact same response rate. Actually yours is the most similar I have ever seen in 2 years of being on the CML Forums (here and LLS)! I agree that even turtles will do well

by kat73 (Mar 6)

Great post. My schedule could be a duplicate of yours. The difference is that in my early months I wasn't made aware of the Guidelines (US or European) and instead my onc just kept

by MartinZA (Mar 6)

Hi everyone
This is just a posting that I would like to make to provide some hope for people who have sub-optimal / slow responses to the TKIs and who miss the milestones. I am writing this
Category: Treating CML

Replies: 3

Last updated: 8 March 2018
Carole on 6 March 2018

Category: Uncategorised

Replies: 7

Last updated: 7 March 2018

Husband just been diagnosed
by T and M (Mar 7)

Carole, welcome and thank you for sharing your journey. I am in the same boat with my husband Tim. He was diagnosed September 2017. We are 5 months into the journey and you will

by LouiseS (Mar 6)

Carole we are now getting my husband’s blood results back in advance of meeting with the doctor. That allows me to do my googling , ask questions here etc before we meet with him.
We found it

by Carole (Mar 6)

Thank you for replying. I’m glad that your husband is responding well to treatment. I intend to go to every appointment with my husband so that I can understand everything that’s going on with him

by Carole (Mar 6)

Thank you for responding. I’m still trying to get to grips with all the terminology and everything about CML but I’m hoping that if there’s anything I find that I’m unsure of I will be able to find
Category: Uncategorised

Replies: 7

Last updated: 7 March 2018
Isla D on 6 March 2018

Category: Uncategorised

Replies: 4

Last updated: 7 March 2018

Unable to send PMs ... any hints?
by Isla D (Mar 7)

Thanks everyone! Thanks David!

by David Fitz (Mar 6)

Must be my mistake. Perhaps that option is only available to the forum administrators - it shows up for me so I thought it was there for everyone.
Let me look into it and see if we can make that

by scuba (Mar 6)

Same here ... I can't see any "contact" option to send a private message.

by Sandrea (Mar 6)

Isla D, I can't see any 'contact' option too, that's what I see when I click your name: Isla.jpg
Category: Uncategorised

Replies: 4

Last updated: 7 March 2018
Sligo Jo on 21 February 2018

Category: Uncategorised

Replies: 15

Last updated: 8 March 2018

Newly registered and saying hello.
by RC Kirk (Mar 6)

Hi David,
I'm not seeing a contact button when I go to your profile. Here's what I'm seeing:

logo
    Home
    Forum
    About CML

by Sligo Jo (Mar 4)

Thanks David.

by David Fitz (Mar 4)

If you want to send someone a private message, you can click on their name beside a forum post, then on the next page you can press "contact" and that will allow you to send a private message.
David

by Sligo Jo (Mar 4)

Hello again and thanks for the recent replies. It is starting to feel like a much smaller world now and your good wishes are very much appreciated.

Liz I am not sure that there is a pm
Category: Uncategorised

Replies: 15

Last updated: 8 March 2018
JohnFromChicago on 3 March 2018

Category: Uncategorised

Replies: 14

Last updated: 18 July 2018

Curcumin the Nitty Gritty
by RC Kirk (Mar 6)

Thanks for the info!

by AnnieS (Mar 6)

The capsules are size 00. The ratio is 1 x tsp turmeric to 1/8th tsp pepper. I buy empty capsules from eBay. I am not saying that this way is perfect or that it will work for

by JohnFromChicago (Mar 5)

Thanks Sandrea for shedding some light on this, that makes sense!

by Sandrea (Mar 5)

You need to eat up to 400 grams of turmeric per day to get 8 grams of Curcumin, as kitchen turmeric contains just 2% Curcumin, it would be impossible to eat enough to get the same dose. (In the
Category: Uncategorised

Replies: 14

Last updated: 18 July 2018
sandy craine on 27 February 2018

Category: Food & fitness

Replies: 7

Last updated: 3 March 2018

Adding Curcumin?
by Bronson_CLE (Mar 3)

Knowing that I won't die from CML but from the COPD and that the benefits from curcumin helps both is definitely a plus. I appreciate all your feedback.
Thank you!

by scuba (Mar 2)

One additional note - although it was my CML that motivated me to take Curcumin. The main benefit I am experiencing with Curmin is the elimination of arthritis and my skin has changed dramatically.

by Bronson_CLE (Mar 2)

Thank you Scuba for the reply.

by scuba (Mar 1)

Hi Kathy,
Research has shown that 8 grams of standarized Curcumin is needed per day to effect cancer cells in vivo.
Some Curcumin formulations boast of higher bio-availability (w/ bioperine ...aka
Category: Food & fitness

Replies: 7

Last updated: 3 March 2018
David Fitz on 1 March 2018

Category: Uncategorised

Replies: 1

Last updated: 1 March 2018

Help CML Support by registering with AmazonSmile
by sandy craine (Mar 1)

Thanks David,
I have signed up - it's easy to do.
Sandy

by David Fitz (Mar 1)

We have recently signed up with AmazonSmile - a charitable programme Amazon run to donate a small amount of your purchase price to registered charities. This is open only to people who shop on
Category: Uncategorised

Replies: 1

Last updated: 1 March 2018
Sally12 on 10 November 2017

Category: Children & young people

Replies: 4

Last updated: 28 February 2018

Teens with cml
by Irishmammy (Feb 28)

Hello and sorry to hear about your daughter. I'm a mum of an 8 year old who is on Imatinab. She is doing well TG. Yes the facebook group is quite good but I really must stress that in the early days

by David Fitz (Feb 28)

To send a private message, click on the person's username next to their post. There should be a "contact" option on the next page that loads, and you can send a message from there.
We are looking in

by partyofmann (Feb 28)

Hey Sally! I too have a 14 year old daughter that was diagnosed right before her 13th birthday. Its incredibility stressful for me lol, but she is handling it quite well. If you

by sandy craine (Nov 11)

Hi,
It is rare in young people - pretty rare disease in adults too (1 per 100,000). You may want to take a look at the Children with CML group on facebook. At least you can then talk to other
Category: Children & young people

Replies: 4

Last updated: 28 February 2018
Riggered on 28 February 2018

Category: Uncategorised

Replies: 1

Last updated: 28 February 2018

New arrival
by scuba (Feb 28)

Hi Riggered - Good to see you over here.
I check the new LLS site from time to time, but prefer this site. As more of you come over, it will add to the rich diversity of experiences and insight

by Riggered (Feb 28)

Hi all,
CML Support UK looks like a great resource. I am happy to recognize a lot of people from the previous US - LLS forum. I'm not sure where to jump in here, so I'm starting a new
Category: Uncategorised

Replies: 1

Last updated: 28 February 2018
Christine R on 28 February 2018

Category: Treating CML

Replies: 2

Last updated: 28 February 2018

Nilotinib plus proposed chemo for breast cancer
by Christine R (Feb 28)

Thank you.
i have sent a list of questions to the Hamersmith this morning as they are much more pro-active than the oncologist. Just trying to get my head around the whole thing at the moment

by sandy craine (Feb 28)

Hi Christine,
I am sorry to hear you have breast cancer as well as CML. I understand why you would be very concerned about stopping your TKI while undergoing further chemotherapy for the BC. I would

by Christine R (Feb 28)

Hi
i had breast cancer in 1998 and 2001 followed by CML diagnosed in 2003. Currently on Nilotinib and levels are all good. i have now been daignosed with more breast cancer which is HER2+ as well as
Category: Treating CML

Replies: 2

Last updated: 28 February 2018
ruddoug09 on 26 February 2018

Category: Getting help

Replies: 1

Last updated: 28 February 2018

STIM - any stories?
by Richard42 (Feb 28)

Hi there
I was diagnosed in 2009 at 42, with two young children at the time. My PCR quickly became essentially zero so when the trial became available, I was one of the first Hammersmith

by ruddoug09 (Feb 26)

Hi all

Ages since I've posted as the CML is just something that is there now, nothing to worry about. My PCR results for the last few years have been 0.00 to 0.02, with the last 5
Category: Getting help

Replies: 1

Last updated: 28 February 2018
Romo on 28 February 2018

Category: Uncategorised

Replies: 0

Last updated: 28 February 2018

Dasatinib dose management for the treatment of chronic myeloid leukemia
by Romo (Feb 28)

http://onlinelibrary.wiley.com/doi/10.1002/cncr.31232/full

Romo
Category: Uncategorised

Replies: 0

Last updated: 28 February 2018
AF on 7 February 2018

Category: Uncategorised

Replies: 14

Last updated: 27 February 2018

New CML - fatigue and low hemoglobin
by loafer (Feb 27)

I have been taking a 500mg Tumeric/Cercumin capsule, my latest blood work from 2 February 2018 were all normal range and a 0.134 PCR. I did make one rather large mistake, the blood draw was on a

by iffat (Feb 27)

Hello

I would like to know what kind of curcumin supplement you took please? I have low blood count as well.

Thanks

by LouiseS (Feb 13)

Hi Af
When my husband was diagnosed his WBC was at 200k and it rose another 20k before the Sprycel kicked in. It’s now at 4 k and has been in the normal range since about 3 weeks in. His platelets

by T and M (Feb 12)

Looks like you have been getting great advice. When my husband Tim was first diagnosed in September 2017 (age 46) his hemoglobin was 112 (140 being bottom end of normal). He has been on
Category: Uncategorised

Replies: 14

Last updated: 27 February 2018