You are here

Forum

Mixail on 16 October 2019

Category: Blood tests

Replies: 4

Last updated: 18 October 2019

Has anyone seen this article from October 15th. Is this be real. Thank you.
by Mixail (Oct 18)

I have not any more about it.

by Vikram (Oct 18)

Miristen drug...... Any news and updates...?????
Only hope???
No update in internet
No news.........

by Mixail (Oct 16)

Thank you David.

by David Fitz (Oct 16)

Not necessarily not “real” - but it’s a mouse study, so a long way away from common in clinic.
All the same, there are upcoming trials that will look to combine other drugs (
Category: Blood tests

Replies: 4

Last updated: 18 October 2019
Sd on 12 October 2019

Category: Uncategorised

Replies: 7

Last updated: 17 October 2019

Thinning hair
by koralia.pappi (Oct 17)

Hi,
I'm also on Nilotinib, 4.5 months now, I have seen some increased hair loss too (nothing too serious, but definitely more than before).
But in the last few weeks I think it has reduced

by Sd (Oct 15)

Hi Vicky,
I never have had eyebrows, so no loss there. None the less, all these messages are encouraging. I don't intend to be vain. I am just curious about what others have experienced.
Thanks

by VickyK. (Oct 15)

Hi!

I had the same problem but with nilotinib.The first 3 months I was loosing a lot of head hair and my eyebrows almost disappeared but now after one year are much better.Hope the same for

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?
Category: Uncategorised

Replies: 7

Last updated: 17 October 2019
lupus on 16 October 2019

Category: Blood tests

Replies: 2

Last updated: 16 October 2019

Understanding my PCR results
by David Fitz (Oct 16)

If your doctor is not being helpful, just ask for a copy of the lab report. You’re entitled to it and it will tell you what you need to know and we can help you interpret it.
David.

by RC Kirk (Oct 16)

Hi Tomas,
It might be helpful for you to get copies of your BCR/ABL1 PCR reports. If you're correct and your three month PCR score was 1.4% IS (International Standard), then you're

by lupus (Oct 16)

Hello everyone,
could you please help me understand my pcr results as my physician is kind of enigmatic about this particular matter. Today (after 4 months), I finally succeded in convincing (we had
Category: Blood tests

Replies: 2

Last updated: 16 October 2019
Nazia on 14 October 2019

Category: Treating CML

Replies: 9

Last updated: 16 October 2019

Currently diagnosed CML
by David Fitz (Oct 16)

Don't just accept the suffering ... if it continues, or gets worse talk to your doctor about trying a different TKI.
In the meantime, experiment with heat (hot water bottles, hot bath) or cold (

by Nazia (Oct 16)

Thanks David,

My pain is constant not as cramps

Its nor too sharp neither mild it is moderate but keeps me restless

I really want to get rid off it because it has disturbed my

by David Fitz (Oct 16)

Hi again Nazia,
Is the pain constant, or does it come and go? When I had sharp pains at the start of my treatment, they would be not too bad and then suddenly for a very short time extremely painful

by David Fitz (Oct 16)

Well, it’s just plain old codeine - a simple opiate. It works well on pain. Addiction problems with opiates happen when taken for a long time, and in the absence of actual pain to deal with. I
Category: Treating CML

Replies: 9

Last updated: 16 October 2019
Aeje10327 on 11 October 2019

Category: Blood tests

Replies: 2

Last updated: 15 October 2019

Neutropenia when starting gleevac
by kat73 (Oct 15)

Yes, a lot of us get that low, and some of us stay there. If it drops down to .5 the docs begin to get nervous. When I was on Gleevec, it took me some months (and a couple of breaks,

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: 2

Last updated: 15 October 2019
scuba on 12 October 2019

Category: Uncategorised

Replies: 2

Last updated: 15 October 2019

Food (or lack thereof) for thought ...
by scuba (Oct 15)

You need to be fasting more than two days to get the autophagy benefit. Autophagy ramps up when your body enters ketosis. I verify using ketone strips.
Staying in ketosis for a period of time allows

by Antibody Boy (Oct 15)

Cool insights regarding potential immune cell trafficking. I have been intermittent fasting regularly for nearly a year now with an eating window of 6-8 hours per day. The purpose of this is

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: 2

Last updated: 15 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
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
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
Snowman35 on 2 October 2019

Category: Drug-food interactions

Replies: 2

Last updated: 3 October 2019

Interactions between Sprycel and herbs?
by Snowman35 (Oct 3)

I ll read it!! Thanks a lot David!

by David Fitz (Oct 3)

CYP3A4 enzyme inhibitors are what you need to look out for - that’s the reason grapefruit is a no-no.
Here’s a table of interactions on that basis - herbs and CYP3A4 are at the

by Snowman35 (Oct 2)

Hi all!

I know that many herbs are very beneficial for our health. Has anybody discussed with his doctor about herbs? Except St jonsons wort ,I don't know any other herb that is forbidden .but
Category: Drug-food interactions

Replies: 2

Last updated: 3 October 2019
Don Adkins on 25 October 2007

Category: Uncategorised

Replies: 6

Last updated: 2 October 2019

Update Don Adkins
by Lorilyn316 (Oct 2)

Hi Don, just wondering if you are still on TKI’s. My husband went through BMT recently for blast phase. Doctor wants him back on 140 Sprycel right away to help prevent relapse. That’s

by sandy craine (Oct 29)

Hi Don,

i too am glad you got a second opinion! imagine if you had not been as pro-active a patient as you are and just let them get on an treat something that you didn't have! it is a lesson

by Don Adkins (Oct 27)

Hi Russ,
I replied earlier to you but somehow the post disappeared - maybe something I did, don't know. You've had a tough time but it sounds like things are improving daily. You really can't ask

by russ whales (Oct 26)

Diagnosed May 2002

Interferon - no response

Glivec - brief response - increased dose but low platelet count

Stopped Glivec

Matched unrelated donor mini-transplant dec 2004
Category: Uncategorised

Replies: 6

Last updated: 2 October 2019