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David Fitz on 12 October 2019

Category: Uncategorised

Replies: 1

Last updated: 13 October 2019

PinnedVideos of UK CML Patient Day now available
by Nimbus2 (Oct 13)

Thank you, David, I appreciate but this must have been a lot of work for you. Even having attended the conference, I am viewing the videos again. The 10:55 presentation by Jane Apperley and the 11:

by David Fitz (Oct 12)

All the videos from the UK CML Patient Day are now available to view:
https://cmlsupport.org.uk/article/uk-chronic-myeloid-leukaemia-patient-d...
Follow the agenda on the page for each individual
Category: Uncategorised

Replies: 1

Last updated: 13 October 2019
Vikram on 13 October 2019

Category: Blood tests

Replies: 1

Last updated: 13 October 2019

Cbc report
by David Fitz (Oct 13)

Vikram,
I’m not sure I understand your question.
600mg of imatinib is a lot for someone undetectable for 7 years.
CBC cannot show CML. Impossible. It’s just commentary on the report.

by Vikram (Oct 13)

UNDETACTABLE LAST 7 YEARS
IMATINIB 600 DOSE
Fully fit....... Like normal person....
MY QUESTION IS
Current CBC REPORT diagnoses patient is cml patient???
( Medical test (cbc test and urine
Category: Blood tests

Replies: 1

Last updated: 13 October 2019
Sd on 12 October 2019

Category: Uncategorised

Replies: 4

Last updated: 13 October 2019

Thinning hair
by Sd (Oct 13)

Actually menopause took care of my leg hair and already started contributing to thinning hair on my head.
May I ask if you took imatinib initially? If so why are you now taking nilotinib?

by Sd (Oct 13)

Thank
S th

Thanks so much for the info.

by David Fitz (Oct 12)

Imatinib seems to do all sorts to hair. I know of people who said it made their straight hair go curly, and other weirdness. Imatinib made my hair go very dark. All the little bits of grey I

by alexmcpee (Oct 12)

I have hair thinning on Nilotinib which is basically Imatinb but x30 stronger. Apparently. I am 37 still have a full head but it’s defo thinner. Especially the early days. I’ve lost a
Category: Uncategorised

Replies: 4

Last updated: 13 October 2019
scuba on 12 October 2019

Category: Uncategorised

Replies: 0

Last updated: 12 October 2019

Food (or lack thereof) for thought ...
by scuba (Oct 12)

https://www.wbur.org/commonhealth/2019/08/23/intermittent-fasting-immune...
'Magic Soup': How Intermittent Fasting May Enhance The Immune System
Category: Uncategorised

Replies: 0

Last updated: 12 October 2019
ian hinley on 17 October 2018

Category: Treating CML

Replies: 65

Last updated: 12 October 2019

Starting TFR in November after 9 years of daily drugs
by ian hinley (Oct 12)

Yes am taking 4 Brazil nuts daily and also supplementing vitamin d. Hopefully just bouncing and next month will be a key result 🤞

by scuba (Oct 12)

Ian - There does seem to be a trend, but it is still below the "resume" threshold.
Are you taking selenium? (200 mcg per day). Recent research suggests selenium interferes with leukemic

by ian hinley (Oct 12)

Results today not so good up to 0.084 from 0.030 last month but still below 0.1 so have couple of months drug free at least ahead. 11 months TFR now, so will make it over a year drug free but still

by scuba (Sep 19)

You are in the noise of the test. You are looking very stable.
Also - we don't know if your levels are now the result of normal bcr-abl formation that happens naturally in normal population. In
Category: Treating CML

Replies: 65

Last updated: 12 October 2019
Aeje10327 on 11 October 2019

Category: Blood tests

Replies: 1

Last updated: 12 October 2019

Neutropenia when starting gleevac
by Crfharris (Oct 12)

My neutrophils dropped to 1.3 after 30 days on imatinib. Doctor said they didn't want to see it drop below 1 and this was not unusal. He wasn't sure if it had already dropped to the lowest

by Aeje10327 (Oct 11)

I have been on 400 mg of gleevac for around a month. I just went for follow up and my WBC count was 1, 0% neutrophils. I know people have mentioned that their counts dropped when first starting
Category: Blood tests

Replies: 1

Last updated: 12 October 2019
labros on 9 October 2019

Category: About CML

Replies: 4

Last updated: 11 October 2019

3-months results reveal that I achieved MMR in the peripheral blood but not CCyR in the bone marrow
by ColoradoGuy (Oct 11)

I had a strange result about a year ago too but probably the opposite from this example. My BMB showed 0.11 while blood pcr was around 0.3.....Dont fully understand it but don't really want another

by labros (Oct 11)

Thank you both for your answers. I've called the lab that did the analysis of the bone marrow, since I was curious as well. They've informed me that more than 20 molecules have been tested (

by alexmcpee (Oct 11)

I always wondered about this correlation of PCR <1% and CCYR through bone marrow. I always wondered why if the <1% PCR do they even do a bone marrow test if that is the correlation. I realise

by David Fitz (Oct 10)

Hi,
You are right - it means you are in an unusual situation where your PCR is below 0.1% but you have not yet achieved CCyR. CCyR is usually roughly proxied to a PCR of about 1%.
You may well be
Category: About CML

Replies: 4

Last updated: 11 October 2019
Tanya Cuffe on 12 September 2019

Category: Uncategorised

Replies: 13

Last updated: 11 October 2019

Non detectable-Yay!Now what?
by Felix (Oct 11)

Hi Alastair, my eyesight has changed slightly need reading glasses now they changed quite quickly after starting Dasatinib and I had only just had my eyes tested and there wasn't any change then

by AlastairC (Oct 11)

Denise great news. Any side effect issues?

by Mick E (Oct 11)

Bit of good news to brighten up a rainy day! 😁

by Tanya Cuffe (Oct 10)

That’s great Denise,and a relief for you!Am happy for you🙂Am going see Doc again in November,she was going to discuss me going to 20mg with her colleagues as she has never had anyone on that
Category: Uncategorised

Replies: 13

Last updated: 11 October 2019
Mick E on 11 October 2019

Category: Uncategorised

Replies: 2

Last updated: 11 October 2019

Discontinuation of 3rd Tki
by Mick E (Oct 11)

Thanks for the reply 😁
good to hear you are responding well!!👍🏻
it’s reassuring to hear it may not exacerbate heart/lung conditions!
hopefully they may start at lower dose if that option is

by cmljax (Oct 11)

Sorry to hear about this Mick. I started on 600 mg/day of nilotinib 3 years ago at Dx. While I had a slew of nasty side effects that led to 3 successive dose reduction to 150 mg/day,

by Mick E (Oct 11)

Hello to all 😁
I have now had to stop Dasatinib due to worsening cardio respiratory problems.
I had an undiagnosed problem prior to being diagnosed with luekemia which now looks like it
Category: Uncategorised

Replies: 2

Last updated: 11 October 2019
Cdonohue95 on 10 October 2019

Category: Treating CML

Replies: 2

Last updated: 10 October 2019

5 months with CML
by Cdonohue95 (Oct 10)

Thank you for that and I will deffently talk to my doctor. my question is how much the 50mg seems to be more effective then 70 or 100mg? They keep telling me that I am the youngest patient that they

by scuba (Oct 10)

Ask your doctor to lower your dose further to 50 mg - perhaps lower to 40 mg and monitor bcr-abl progress. There is excellent liklihood you will continue to trend lower (perhaps even faster than you

by Cdonohue95 (Oct 10)

Hello all.
My name is Chris, I was 23 when I was told the news. just a few months before my birthday. I am 24 now and had 240k WBC since then my WBC is floating between 4 to 6k. my latest BCR ABL as
Category: Treating CML

Replies: 2

Last updated: 10 October 2019
Nimbus2 on 10 October 2019

Category: Uncategorised

Replies: 2

Last updated: 10 October 2019

PROTAC
by kat73 (Oct 10)

Sounds great for those who stop responding to imatinib (or don't respond well initially), but then, we already have options of different TKI's for that. Of course, the more the merrier

by scuba (Oct 10)

Fascinating ...
I wonder if a natural "protac" mechanism can achieve the same thing:
https://www.ncbi.nlm.nih.gov/pubmed/16815497
This is the mechanism I believe may be at work when a

by Nimbus2 (Oct 10)

Has anyone heard of any PROTAC trials yet?
https://massivesci.com/articles/protac-cancer-melting-proteins-chronic-m...
A team of chemical biologists from Yale University and Oregon Health and
Category: Uncategorised

Replies: 2

Last updated: 10 October 2019
scuba on 1 October 2019

Category: Uncategorised

Replies: 14

Last updated: 10 October 2019

Every other day dosing can be successful (dasatinib)
by scuba (Oct 10)

Finding the best drug and ideal dose which works best is more art than science at this point in CML treatment. There are very few clinical studies being conducted in this area of dose matching to

by alison (Oct 10)

I am very interested in this thread and you all may be interested in my husband’s experience. Diagnosed 2012 (was very fit 68 y.o. At time of dx) with low disease load and became

by hannibellemo (Oct 4)

Karinne,
I had actually thought about that this summer. At that time I thought my option would be to go to bosulif and because its effectiveness for me was unknown I decided not to bring it up

by Karinne (Oct 3)

Dear Pat, so good to hear from you. And especially that your PE is reducing little by little. I like option 2 but what about stopping Sprycel for 2 months and hope that your lung would clear, now
Category: Uncategorised

Replies: 14

Last updated: 10 October 2019
WendyAR on 8 October 2019

Category: Uncategorised

Replies: 10

Last updated: 9 October 2019

New to CML Support
by kat73 (Oct 9)

Joan Rivers' Great Hair Day. Covers your bald spots (not for covering the gray hair roots).

by WendyAR (Oct 9)

Yes, mine are too but they were thinning before the Sprycel. I began working with a dermatologist a year before my CML diagnosis for thinning hair. Treatments seemed to be improving my situation but

by WendyAR (Oct 9)

Hello kat73. Thank you. I DO feel like I'm being brushed off. My doctor is an Oncologist/ Hemotolgist at NYU Perlmutter Cancer Center. My mom is a retired nurse practitioner who said, "you

by ColoradoGuy (Oct 9)

When I was taking 100mg Sprycel I did notice that my eybrows started to thin. I took some time before I noticed it but I would say it was related to the Sprycel as I had never had this issue
Category: Uncategorised

Replies: 10

Last updated: 9 October 2019
koralia.pappi on 4 October 2019

Category: About CML

Replies: 8

Last updated: 9 October 2019

BCR/ABL transcripts VS mutations
by koralia.pappi (Oct 9)

Well, thank you both! Now it makes sense!
😊
Regards,

Koralia

by scuba (Oct 9)

Excellent summary.

by Antibody Boy (Oct 9)

Hi Koralia,
Here are some answers to your follow up questions.
1. You are correct the transcript type is verified by qualitative PCR. Each type (p190, P210 or other) requires different PCR probes.

by koralia.pappi (Oct 9)

Hi Scuba,
Thanks for the reply :)
I still have some unanswered questions, I hope I'm not tiring you all!
1) About transcripts: My transcript was not identified by FISH, but by qualitative PCR.
Category: About CML

Replies: 8

Last updated: 9 October 2019
Karinne on 4 October 2019

Category: Uncategorised

Replies: 12

Last updated: 8 October 2019

12 months of TFR
by Chuckster (Oct 8)

CONGRATS!!
Great News!!!

by mamodei (Oct 8)

Wonderful!

by scuba (Oct 5)

Exactly!

by Karinne (Oct 5)

Thanks. And I just realized that if I was going to MD Anderson, because they report only 2 digits, I would have been undetected after a year of treatment and still undetected for 5 years with
Category: Uncategorised

Replies: 12

Last updated: 8 October 2019
mamodei on 9 September 2019

Category: Side effects

Replies: 10

Last updated: 7 October 2019

Neurological side effects with nilotinib or dasatinib
by mamodei (Oct 7)

My dose has been reduced to 50. Hoping this will turn things around for me.

by mamodei (Oct 2)

I have Lymes disease, which certainly muddies the water about what symptoms are what. This is not my first time with Lymes and usually the doxycycline gets the symptoms under control in just a

by kat73 (Sep 17)

I strongly suspect your symptoms are residual effects of your TIA. As such, they may be permanent and unaffected by Sprycel or any other TKI.

by Riggered (Sep 16)

I've been on Dasatinib for 25 months now and had some brain fog along the way. I was on 100mg daily at the start and it was very difficult to function with extreme fatigue. Many well informed
Category: Side effects

Replies: 10

Last updated: 7 October 2019
Sd on 7 October 2019

Category: Uncategorised

Replies: 2

Last updated: 7 October 2019

Cost of medications
by Sd (Oct 7)

Thank you

by David Fitz (Oct 7)

Hi - I don’t know the answer to your question, but you are certainly welcome to pose the question here.
David.

by Sd (Oct 7)

I know this is an international support group, so I am hoping you can give me some guidance. I live in the US and am looking for Canadian pharmacies to purchase my imatinib. I don't know if I
Category: Uncategorised

Replies: 2

Last updated: 7 October 2019
MANNI OBEROI on 4 October 2019

Category: Blood tests

Replies: 5

Last updated: 5 October 2019

Cml is genetic or not
by MANNI OBEROI (Oct 5)

Thank u very much

by David Fitz (Oct 5)

When your CML is under control, there’s nothing you can’t do. Including marriage and children!
CML is caused by a genetic mutation in your bone marrow. You weren’t born with

by scuba (Oct 4)

Yes - you can get married. You can have children. They will grow up and be successful.
CML is a bone marrow stem cell disease involving a mutation of blood stem cells. Having children involves

by MANNI OBEROI (Oct 4)

David I didnt understand it is genetic but not pass to children's.......please suggest me may I go for marriage or not
Category: Blood tests

Replies: 5

Last updated: 5 October 2019
koralia.pappi on 12 September 2019

Category: Blood tests

Replies: 17

Last updated: 5 October 2019

I just joined the CML community! Q on CHR
by VickyK. (Oct 5)

Great!By the way I love Thessaloniki 😊😊My husband is from Thessaloniki and we are visiting once or twice a year!
Let's keep in touch!

Vicky

by koralia.pappi (Oct 5)

Hi Vicky,
I'm in Thessaloniki. My doctor is Eleni Poumpouridou, at St. Loukas Hospital.
To my knowledge, there are two labs certified in Greece for MR4.5 and IS, one is in ΕΚΠΑ, Athens,

by VickyK. (Oct 5)

Hi Koralia!

Yes correct the lab is at Michalakopoulou 176.My doctor is at Alexandra hospital and his name is Evangelos Terpos.What about you?

Best,

Vicky

by koralia.pappi (Oct 5)

Hi Vicky,
By the way, which doctor are you visiting in Athens? And I guess your PCR is done by ΕΚΠΑ (Dr. Panagiotidis' lab), right?
Regards,
Koralia
Category: Blood tests

Replies: 17

Last updated: 5 October 2019
VickyK. on 4 October 2019

Category: Blood tests

Replies: 2

Last updated: 5 October 2019

PCR Result after one year
by VickyK. (Oct 5)

Thank you very much Koralia!

by koralia.pappi (Oct 5)

Great results Vicky! Congratulations!

by VickyK. (Oct 4)

Hi all!

I am so happy today and just wanted to share with you that after one year on nilotinib I went down to MR4.5!I send all my good energy to all of you!

Best

Vicky
Category: Blood tests

Replies: 2

Last updated: 5 October 2019