You are here

Forum

r06ue1 on 11 January 2019

Category: Treating CML

Replies: 1

Last updated: 13 January 2019

CML Drug Prices in the US
by Gitel (Jan 13)

I also seriously doubt Trump and his team will do anything. Talk big but nothing else.
I did hear that two midwestern Senators, Democrat Klobuchar and Republican Grassley are proposing that

by r06ue1 (Jan 11)

Still insanely high in the US and no, I seriously doubt he (Trump) has a solution.

Will the Trump Administration’s Plan to Reduce Cancer Drug Prices Work?
By
Category: Treating CML

Replies: 1

Last updated: 13 January 2019
Riggered on 28 November 2018

Category: Treating CML

Replies: 6

Last updated: 10 January 2019

Had achieved MMR but lost it
by bendicco (Jan 10)

FYI the pharmacist at Sloan suggested I stay away from any mushroom supplements, don’t know to if that is only with Gleevec. You might want to check it out.

by alliswell (Dec 12)

as i said in my thread
maybe this will be useful for other patients , especially if they were just searching just pcr results for a relief like me months before . i will update after every

by Riggered (Nov 29)

Hi Kat,
Yes we sure do love the trend....when its downward. Like you say.....will see what the next couple of PCR's look like.
Onward to .00000

by Riggered (Nov 29)

Thanks Scuba....
I had my Vitamin D level checked about 3 months ago. It was 74 ng/ml
My daily supplement list:

"Liquid Vitamin D3 with K2". 125 mcg D3 (as Cholecalciferol),
Category: Treating CML

Replies: 6

Last updated: 10 January 2019
sandy craine on 5 December 2018

Category: Treating CML

Replies: 27

Last updated: 9 January 2019

20 years since diagnosis
by Richard42 (Jan 9)

Sandy
Belated congratulations on this milestone - I've not been on the forum for some weeks so just seen this thread.
Many thanks for your help and insight over the past nearly 10 years (

by sharon morris (Dec 29)

Hi Sandy,
Huge congratulations on this wonderful milestone!!! You were such an inspiration and a lifeline to me when I was first diagnosed. So much wonderful help in those awful first months. Many

by Felix (Dec 26)

Hi Sandy ,congratulations on your 20 year anniversary you give us all hope.I just read you are from Liverpool I live just over the water on the Wirral.Do you attend RLUH if so are there a few

by MartinZA (Dec 21)

Dear Sandy
I can't believe your incredible story. You are an inspiration to me and a constant reminder that it is possible to live a good and long life with this condition. Thank you
Category: Treating CML

Replies: 27

Last updated: 9 January 2019
JS001 on 1 January 2019

Category: Treating CML

Replies: 5

Last updated: 9 January 2019

Help - Nilotinib fourth line or retry Dasatinib?
by cmljax (Jan 9)

Yes, since 150 mg is the smallest dose available, I take it once a day in the AM, so I don't have to worry about fasting in the evening and at night. Tasigna in in capsule form, so you

by JS001 (Jan 8)

Hi cmljax,
Thanks for your reply. It’s really great news and reassuring to read that you have had such a good response on Nilotinib. I know I am likely to have to switch to Nilotinib in future

by cmljax (Jan 8)

I'm a bit surprised that Scuba hasn't chimed in on this yet, but if he does, he will tell you that there is some evidence to suggest that dasatinib doses less than 100 mg are actually more

by JS001 (Jan 8)

Hello everyone,
I decided to restart on 100mg Dasatinib last Friday in the absence of any conclusive data for previously treated patients. I also felt uncomfortable taking a lower dose than
Category: Treating CML

Replies: 5

Last updated: 9 January 2019
bendicco on 8 January 2019

Category: Treating CML

Replies: 2

Last updated: 9 January 2019

Gleevec has run it's course
by bendicco (Jan 9)

Thanks for your response. Stay well.

by cmljax (Jan 8)

Your options are Sprycell, Tasigna and Bosulif. I only have experience with Tasigna, which has worked very well on my CML. I had a bunch of not so typical side effects that have mostly

by bendicco (Jan 8)

Hi all, so good to have this resource and all your input!
I have had CML for almost 3 years, + for Philadelphia gene, and been on Gleevec 400 daily (generic) aside from an initial week or so on
Category: Treating CML

Replies: 2

Last updated: 9 January 2019
Tidal-Life on 16 November 2018

Category: Treating CML

Replies: 7

Last updated: 2 January 2019

I'm unresponsive - 3 TKIs failed, 2 left to try
by JS001 (Jan 2)

Hi,
I’m in a similar situation having failed my third line therapy due to intolerance, although my remaining 2 TKIs are Nilotinib and Ponatinib.
Since you have no mutations, I would try

by onekayaker (Dec 30)

I failed/rejected dasat but was started on bosutinib gradually...100mg 2 weeks, 200mg 2 weeks, 300mg and staying on 300 since response was good according to reports. I did not have the

by RC Kirk (Dec 29)

Just curious, what was your experience with the trial of Asciminib?

by cmljax (Dec 29)

What breakpoint(s)/rearrangement(s)/ were discovered in any of your bone marrow biopsies? The typical breakpoints are either e13a2 P210 or e14a2 P210, but some CML patients have atypical BCR-ABL
Category: Treating CML

Replies: 7

Last updated: 2 January 2019
JoeyD on 13 December 2018

Category: Treating CML

Replies: 4

Last updated: 13 December 2018

Side effects of nilotinib
by Mona Gard (Dec 13)

I was diagnosed in August of this year but my head itching started before I was diagnosed. After I started on gleevac it stopped. Me personally thinks it was a symptom of the cancer. A

by cmljax (Dec 13)

Hi - I've been on Nilotinib for nearly 27 months - started on 600 mg and had many, many side effects - one was itchy scalp caused by folliculitis, a common side effect of nilotinib. These were

by JoeyD (Dec 13)

Thank you so much for prompt reply. I have tried 2 shampoos but will give Tgel a go!

Had you been on Imatinib first or did you go straight on to Nilotinib? I had several side effects,

by CM-elon (Dec 13)

Hi there...I was diagnosed at about the same time and had a similar issue. Felt like tearing my hair out at times and it kept me awake at times in the night. I'm not sure if it was coincidence
Category: Treating CML

Replies: 4

Last updated: 13 December 2018
scuba on 7 December 2018

Category: Treating CML

Replies: 16

Last updated: 13 December 2018

Curcumin & Vitamin D - interesting research results (from ASH)
by scuba (Dec 13)

Sandy,
Here is the video documenting optimum levels of vitamin D I referred to in an earlier post.
https://youtu.be/z6M1ARtCi6c
The entire video is a great education on vitamin D overall. The spot

by scuba (Dec 13)

Sandy,
It is so sad to see people suffer needlessly when a simple solution like raising ones vitamin D level can do so much.
I have not had a flu or serious cold in more than six years since raising

by sandy craine (Dec 13)

Hi Scuba,
yes, I take your point about the general guidance for D3 levels but.... as I said.... personally I find I have responded better to a higher level which is why I currently like to keep

by scuba (Dec 12)

Sandy,
I would be cautious in raising vitamin D level much above 80 ng/ml. Research has shown (will post link when I find it again!) that ideal level for vitamin D in the blood for cancer and
Category: Treating CML

Replies: 16

Last updated: 13 December 2018
M.ashcroft on 8 December 2018

Category: Treating CML

Replies: 4

Last updated: 10 December 2018

Vitamin D & CML
by M.ashcroft (Dec 10)

Hi David thanks for your advice I do as you suggest

Mike

by David Fitz (Dec 9)

It should also be trivial for your haematologist to add a Vit D test to your next routine bloods. Just ask next time.
David

by M.ashcroft (Dec 9)

Hi Kali

Thank you for your feedback I will speak with my GP about this and ask to have my vitamin D tested

Kind Regards

Mike A

by kali (Dec 9)

I have learned from others on here that Vitamin D plays a significant role in helping our immune system.
I have had low vitamin D for years and have just recently been able to get it into the
Category: Treating CML

Replies: 4

Last updated: 10 December 2018
cmljax on 5 December 2018

Category: Treating CML

Replies: 1

Last updated: 5 December 2018

Genomic Testing
by scuba (Dec 5)

One of the "off target" effects of dasatnib I am hoping for:
http://majormouse.org/?q=node/103

by cmljax (Dec 5)

So my wife sends me this link and I am wondering if anyone here has any thoughts on whether or not this would be a good tool to use to determine which TKI might have the fewest and/or least severe
Category: Treating CML

Replies: 1

Last updated: 5 December 2018
Daphne Lynn on 4 December 2018

Category: Treating CML

Replies: 2

Last updated: 5 December 2018

Two years into treatment and needing advice
by RC Kirk (Dec 5)

Daphne, I also agree with starting on lower dose of dasatinib. When I was taking 100mg/day, it made my heart skip a beat sometimes and I didn't like it at all.
Your PCR scores have

by scuba (Dec 5)

Daphne,
It is good for you to switch off nilotinib given your atrial fibrillation history. Switching to dasatinib will have less of an effect in that regard. And I strongly agree with you on

by Daphne Lynn (Dec 4)

I am now nearing two years since diagnosis and although I feel well my consultant is disappointed with my results and pushing me to change to Dasatinib which would be my third TKI
My brief
Category: Treating CML

Replies: 2

Last updated: 5 December 2018
HKBails on 1 December 2018

Category: Treating CML

Replies: 1

Last updated: 1 December 2018

Hair loss
by AlastairC (Dec 1)

Thanks for this; not sure if this helps but you have struck a chord. I was on 400mg imatinib for 10+ years, reduced to 200mg least year maintained MMR, and stopped about 7 weeks ago. My hairline had

by HKBails (Dec 1)

Hi I’ve been on Imatinib for a month now and have found my hair is really thinning. Right at the front and back of my head. I have 2 patches with very little hair. It is not as obvious to
Category: Treating CML

Replies: 1

Last updated: 1 December 2018
HKBails on 18 November 2018

Category: Treating CML

Replies: 8

Last updated: 20 November 2018

Biopsies
by David Fitz (Nov 20)

In the UK, it's a job quite often given to a SHO (senior house officer) so they can get experience. So people's experiences can vary quite a lot if it's someone who hasn't done it many many times.

by Gitel (Nov 20)

There has been discussion of BMB on this website over the year. Many fear it, others say no problem. Rereading this set of posts I wonder if the techniques used in the United States might differ

by HKBails (Nov 19)

Thank you all, helpful to know. I will look into getting a more experienced person as clearly based on the time taken and the fact I am still in discomfort 3 weeks on it must not have been done well

by David Fitz (Nov 19)

All medical procedures have some risk. A general anaesthetic certainly does, and it would in most cases seem disproportionate risk for a BMB.
Personally, I found a tooth extraction more painful than
Category: Treating CML

Replies: 8

Last updated: 20 November 2018
MartinZA on 12 November 2018

Category: Treating CML

Replies: 2

Last updated: 15 November 2018

Likelihood of adverse events
by MartinZA (Nov 15)

Hi Alastair
Thank you so much for the response - I agree that you are lucky in the UK to have the NHS! (Thanks also for your presentation on the Patient Day - I watched it live here in

by AlastairC (Nov 12)

Hi Martin, a couple of questions. How long have you been in MMR - was losing MMR one of the reasons for your change? Apologies if you have written about that and I've forgotten. Also what dose of

by MartinZA (Nov 12)

Hi everyone
This is a bit of a strange question, and I'm not sure if I should even ask, but any advice would be helpful.
I live in South Africa and am on a private medical aid scheme that has
Category: Treating CML

Replies: 2

Last updated: 15 November 2018
Trang Phung on 14 October 2018

Category: Treating CML

Replies: 1

Last updated: 14 October 2018

Buy brand sprycel 50mg
by sandy craine (Oct 14)

Dear Trang,
Please contact the Max Foundation here - they can advise your mother where she can access TKI therapies in your country.
Sandy

by Trang Phung (Oct 14)

Dear,

Please tell me where I can buy brand Sprycel 50mg without take my mother to go abroad, I am at Viet Nam. I know it is a prescription medicine, but my mother can not go to abroad for some
Category: Treating CML

Replies: 1

Last updated: 14 October 2018
HKBails on 11 October 2018

Category: Treating CML

Replies: 8

Last updated: 12 October 2018

Recently diagnosed with cml
by HKBails (Oct 12)

Thank you all so much I feel much more reassured. I want to enjoy the wedding and have so much to do before then. Hopefully speaking to the consultant Wednesday so I’ll know the plan then, thanks

by kat73 (Oct 12)

HKBails - You are absolutely safe to not start imatinib until after the wedding. The doctors would not have let you do so if you were in danger. I am assuming therefore that you are in

by sandy craine (Oct 12)

Hi and welcome,
It's not a great time for you to have this diagnosis- but then it never is a great time. I was diagnosed just before Xmas 1998 (pre-imatinib era) but managed to get through to the

by chrissie (Oct 12)

Welcome to the group of special people! This is the best place to come for good information about CML. We all remember the roller coaster and shock of diagnosis - you are not alone. I have been
Category: Treating CML

Replies: 8

Last updated: 12 October 2018
RC Kirk on 9 October 2018

Category: Treating CML

Replies: 1

Last updated: 9 October 2018

Interview with Dr. Ehab Atallah - discontinuation of treatment for patients with CML
by Rebecca Bonnell (Oct 9)

The Emphasis being on: " and reduce cost." !!!

by RC Kirk (Oct 9)

Treatment-Free Remission Feasible in Select Patients With CML
Angelica Welch
Published Online:4:14 PM, Fri October 5, 2018

Due to significant advancements in the treatment landscape of
Category: Treating CML

Replies: 1

Last updated: 9 October 2018
Toml on 9 August 2018

Category: Treating CML

Replies: 10

Last updated: 7 October 2018

Help!! PAH and Sprycel onc recommends switch to tasigna
by chigi (Oct 7)

Hi Toml - how are you coming along on Tasigna? Any improvements with PAH? Any fluid retention issues ?
i seem to be in a similar situation. Was on Dasatinib for 5 years. Switched to Bosutinib 6-8

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

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.
Category: Treating CML

Replies: 10

Last updated: 7 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
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