PLEASE REPLY

My name is Vikram  - Welcome Vikram!
I am 27 years old boy
Nationality India

Dignosis cml age 16
10 year ago....

Gleveek (intneeb) 400 MG per day

After 3 years
Change does Gleveek (intneeb) 600 MG per day....

Current does Gleveek (intneeb) 600 MG per day

No changes because report good undertaketable

My question is I can merried?  Yes, many of us are married.  Most of us were probably married before we were diagnosed with CML.

Cml cp (chronic pase)

HOW MANY YEAR SERVIVE?  Normal lifespan for most.

Life time I control cml chronic pase?
Ya deases automatically cml chronic to aucut phase transfer in future?  Yes, it seems most of us will remain in chronic phase and not progress to acute phase if we continue TKI therapy.

Merried normal girl ya merried cml girl

Merried normal girl no question

But merried cml girl
In future
Complications in babies....?  Yes, it is believed that a woman should not become pregnant while on TKI therapy.

SPERM
Fertility problems?  Sometimes, here is a quote from a research study:  Impact of Imatinib on the Fertility of Male Patients with Chronic Myelogenous Leukaemia in the Chronic Phase.

https://www.ncbi.nlm.nih.gov/pubmed/28791527

"One previous case report from our hospital confirmed the
present finding of the negative effects of imatinib on sperm
parameters in CML-CP patients. A male CML-CP patient
who had received imatinib treatment for 4 years, did not discontinue
imatinib treatment at the time of conception. This
patient exhibited a lower sperm survival rate (43.54%), and
reduced sperm activity (16.7%). However, he successfully
conceived, and a healthy baby was born after a normal pregnancy
[24]. Follow-up on the baby was performed 36 months
after birth, and the results demonstrated that the baby grew
normally and remained healthy. Similar instances of the ability
of male CML patients to conceive during imatinib treatment
were reported, despite declines in sperm count, survival rate,
and activity [25, 26]. However, more clinical studies are needed
to evaluate the effects of imatinib on conception and fertility
in male CMP patients.
In summary, this investigation suggests that imatinib crosses
the blood-testis barrier and reduces sperm count, survival rates,
and activity in CML-CP patients. However, reproductive organ
structure and sex hormone levels were not affected. Future
studies should elucidate the mechanisms of imatinib penetration
of the blood-testis barrier and its effects on conception
and fertility."

Cml completely cure possible?  Yes - possible - but not for everyone at this time.

Miristen 126 trails successfully in mice

Human trails date and research?  Waiting

In Google no information available miristen 126 trails? And trails date?

In 2019?  Probably no definite results for several years.

Please reply
I can merried?  Yes

Life time control cml in chronic phase possible?  Probably

Does Gleveek (intneeb) 600 MG per day

After ten years treatment
I have side effects little hair fall  -  Don't worry about it.
Problem

Please reply

My report

20 11 undetectable
2012 undetectable
20 1 3 undetectable
2014 undetectable
2015 undetectable
20 16 undetectable
20 1 7 undetectable

CML CP (CHRONIC PASE)

DIGNOSIS AGE 16 (2008)

CURRENT DOSES

GLEVEEK (INTNEEB) 600 MG PER DAY

DISCREASES DOES 600 TO 400 POSSIBLE?

UNDETECTABLE MEANS?

Hi Vikram,

First, congratulation on being PCRU .. 'UNDETECTED' for so many years. You are in a very good shape. Scuba rightly suggested that you can talk to your doctor regarding dose reduction or sropping entirely.

By the way I am also an Indian .. not in India right now. Got diagnosed a year back and on generic Imatinib. Still a long way to go to be undetectable like you. I am married to an Indian tigress :-) who stood and fought by my side all along. Having your life partener beside you gives the extra strength to confront the devil. However, right education about this condition is necessary before going into a commitment like marriage.

My doc told me not to worry about having children. If we plan we should just consult him beforehand. So, I would request you not to worry too much about future. Just enjoy what life offers.

God bless you my friend.

Life time control cml-CP possible on lower dose of imatinib

Undetectable life time possible? ( Lower dose of imatinib)

Treatment free remission (TFR) LONG TIME POSSIBLE?

Vikam, I spent 10 years on 400mg imatinib. I then reduced to 200mg for a year and remained at 0.000% PCR or very close. I have recently stopped taking imatinib and I am having PCR test every month. There is a good chance I will achieve TFR. As Scuba has said it is certainly worth talking to your doctor about reducing dose initially. UK research has shown that the chance of TFR seems to be improved if the dose is reduced in stages rather than stopping from a higher dose. I hope this helps

HELLO FRIENDS.......

PLEASE REPLY........

I ask my doctor next month to reduce the dose

My life's last SEVEN years is my health is good .

Thank for drugs (gleevec)

Last 7 years my report undetectable (600 MG gleevec (imatinib) dose)

But many side effects

I worried about my future and merrier.

I worried about my future merried life

I'm worried about future drug failures

Please reply my 3 questions

Please..........................

life-time control disease less dose possible?

Life time undertake table less dose possible?

HOW LONG TFR POSSIBLE? MAXIMUM YEAR?

Any latest research or update on

CURE.....
Long time TFR possible
Long time control disease low doses

PLEASE REPLY.....

life-time control disease less dose possible?  Yes, my suggestion would be to talk to your doctor about reducing your dose to 300mg per day.

Life time undertake table less dose possible?  Probably, given your excellent response to TKI therapy so far.

HOW LONG TFR POSSIBLE? MAXIMUM YEAR?  Unknown,  we're still learning about TFR and most of us haven't achieved it.

I will repeat Sid's wise counsel to you:

My doc told me not to worry about having children. If we plan we should just consult him beforehand. So, I would request you not to worry too much about future. Just enjoy what life offers.

God bless you my friend.

Yes, your information is secure. Only the site administrators have access to your contact information.

Please let us know when you are going to be married, so we can celebrate with you!

Who is Merried after Diagnosis in this site?

Hello Vikram,

As CML is a rare disease and is usually diagnosed later in life than you, most who are married with CML were probably already married when they were diagnosed.  According to the American Cancer Society, "the average age at diagnosis of CML is around 64 years.".  When diagnosed I was 48 and had already been married for 25 years.  My oldest daughter will soon be 27 years old.

You might try some of the Facebook groups.  If you are concerned about anonymity, perhaps you could set up an online alias.

There are very few people in the world who are your age with CML. I wish you well in finding answers to your questions.

Kirk

Sorry....

Same question.....
but different style....

life-time control disease less dose possible? How many percentage (%)
( please reply)

Last 7 years my health is good. I hope health better and better in the future year of my life

Appreciate all opinions and replies

Please reply....................

Hi devid thanks for your reply

I know but

I worried about my future and merrier.

I worried about my future merried life

I'm worried about future drug failures.

LIFE TIME CONTROL DISEASE POSSIBLE (PERSENTAGE)?

LAST 7 YEARS DISEASE UNDETECTABLE BUT IN FUTURE?

HOW MANY YEAR undetectable possible?

CML IS DARK SECRET OF MY LIFE

ONLY MY FAMILY AND DOCTOR KNOW

( secrets is my strength)

Maybe one of the reasons you are so scared is because you are keeping your diagnosis of CML a big dark secret. It’s a big secret to hold to yourself and limits the support you can get from other people especially when you are having a bad week. I’m sure you are worried that telling people may limit your chance of getting married  but I hope you plan to discuss this with your future bride before you marry her.  Whether people with CML choose to discuss it with others is their own personal choice but as most of us are married (Given the average age of getting CML) and probably were when we got diagnosed we already likely have a support system in place. Try not to worry so much about the future . You seem to have a very good chance of being able to cease taking meds as others have pointed out. If you worry so much you are going to miss all the good things about today. Good luck

Hi kirk

After 7 months diagnosis

Report (7-2008) is

Bone marrow report : bone marrow aspirations is partially dicuted however is dshow well preserved myeloid and evythroid precursors with preserved maturation me ratio
Preserved normoblastic
Eryrhropoiesis megakaryocytes are occasionally seen pls shows Rbcs are normocytic mild and hypochromic. Wbc and platelet are adequate.

Diagnosis - as patient is known case of CML, present marrow findings are suggestive of controlled cml activity

20 0 9 and 2010 reports missing ( home files) (available in hospitals file)

2008,2009,2010 dose imatinib 400 MG per day

December 2010 reports

Fusion gene copy number :

1785 copies of m-bcr-abl gene /ug RNA

Ration (Fusion gene copies /abl gene copies) : 0.25%

After report doctor change my dose

400 MG imatinib to 600 MG imatinib per day....

November 2011 :Undetectable

2012 :undetectable

20 1 3 :undetectable

2014 : undetectable

2015 : undetectable

20 16 : undetectable

20 1 7 : undetectable

After 7 months diagnosis

Report (7-2018) is - I'm confused about this. Did you have a bone marrow analysis done in July 2018 or is this report from the year you were diagnosed? If this report is from 2018, why did your doctor perform this test?

Sorry

Typing mistakes

Report (7-2008)

Do you know what the limit of detection is for the lab that performs your PCR tests? For example, my lab reports it's limit this way: "The assay has a limit of detection of 0.0069 BCR-ABL1-NCN (%) with high analytical precision at the MMR Level.

Answer

Interpretation of bcr-abl ratio :

Dignosis, pretreatment or
hematologic-relapse - (100)

Complete hematologic response( 10-1)

Complete cytogenetic response ( 0.1-1)

Major molecular response (0.01-0.001)

Undetectable transcript (>0.0001)
(complete molecular response)

2013, 2014, 2015, 2016, 210 7 report

Undetectable

Rc Kirk, devid fits , fiona Vaughan , AlastairC sid

Please reply...........

Thanks for all members
I satisfied on married question

My next check up is next month ( December 2018)

I ask my doctor doctor reduce dose next month again

December 2010 reports

Fusion gene copy number :

1785 copies of m-bcr-abl gene /ug RNA

Ration (Fusion gene copies /abl gene copies) : 0.25%

After report doctor change my dose

400 MG imatinib to 600 MG imatinib per day....

Please reply......

What says report Report?????

.

Turmeric may have a small benefit - the jury is out. But the most important thing - 99.9% of your treatment - is about your TKI.

David.

You are an excellent candidate for reduced dose - (200 mg)).

You are also an excellent candidate for cessation (zero dose).

The choice should be yours and not your doctors. The NCCN protocol permits this based on outstanding scientific results already reported in the literature. All you would need if you decide to stop taking Gleevec is monthly PCR tests to verify your continued PCR status.

You have a 50% chance of remaining treatment free. And if you remain PCR "undetected" for six months your odds of remaining treatment free go up dramatically.

If you decide to go this route and your doctor refuses - get a new doctor.

Thanks.........

What is your vitamin D level as measured by a blood test?

Your doctor is recommending a common dose schedule for people with low vitamin D.

I disagree, however, with one massive dose per week in order to raise vitamin D quickly. It is not good for the body to get massive vitamin D at one time.

Much better to take 10,000 IU's per day for 5 - 6 days per week for 3 weeks to elevate a very low vitamin D level. And then after that schedule moderate your dose so you achieve a vitamin D blood level between 50-70 ng/ml. In my own experience, I need 5,000 IU's per day in summer and 10,000 IU's per day alternate days in winter (5,000 in between) to maintain a vitamin D level around 60- 70 ng/ml.

One should take vitamin K2 along with vitamin D3. They work together to keep calcium out of soft tissue (like arteries). I take 200 mcg vitamin K2 per day.

Vitamin D is vital to immune health - especially in activating T-cells which attack cancer (including CML). I know of no single report of a CML patient at diagnosis who also had high normal levels of vitamin D (i.e. > 60 ng/ml). Correlation? who knows, but in my case again, once I increased my vitamin D level, my PCR plummeted, blast cells disappeared and I am now on very low dose Sprycel and PCRU.

Low vitamin D can result in hair loss.

I can't imagine a doctor prescribing 60,000 IU's of vitamin D and not know your vitamin D blood level.

You should get your vitamin D level checked.

(note: vitamin D3 capsules are the active form of vitamin D.)

???????

Hi Vikram,
I am also indian.Please some help needed from your side.Which hospital now under treatment.which place Vikram and your native place which state.wating for your valuable reply.

Hello ..... ..... ..... ...... Please reply your oppinion ... Side effect hair fall and facial hair ( beard hair ) ( some area of beard no hair ) any suggetion ... Any solution ??? Please reply .......

Hello Vikram,

My advice to you is to tell your doctor that you are taking a lower dose of imatinib at your next appointment.  300mg per day would probably be a good starting reduction and then if you had a PCR test in three months you can verify your undetected PCR score and perhaps reduce to 200mg per day.  I believe imatinib is available in bottles with 90 - 100mg tablets.  It's my opinion that you should have PCR tests every three months if you are on a lower than normal dose of TKI.

As for your head and facial hair - a lower dose of imatinib and getting your vitamin D level up might cause improvement.  Hair growth and patterning are quite unique to each individual so it's hard to say if your hair growth patterns are natural for you or if your years of higher dose imatinib treatment are affecting your hair growth.

Good luck at your appointment.

Kirk

Minoxdil 5 help in hair loss?? Hair fall problem side efect of imtinib any suggetion ..... Please .....

any solution

Any solution

Yes. Minoxidil could help, but it is not a miracle. And it would be very wise to tell about it to your doctor. First of all it is necessary to inform your doctor about dose reduction! Vitamin D, zinc, selen and healthy diet... And also emotional stress has quite a big impact on hair growth. 

Thanks for reply

I know...

But

I try control cml and side effects maximum possible..........

Well, you have two doctors with two opinions. If it were me, I would consider each doctor's opinion and then add my own knowledge to arrive at a decision.  You are the one who takes the medication every day. You get to make the final decision.

With your years of undetectable PCR scores, I would consider it very low risk to reduce to the standard starting dose of imatinib (400mg).

An option to consider would be to reduce to 400mg for a year and then if you remain with undetected PCR scores, reduce to 300mg for a year and then if you remain with undetected status, reduce to 200mg.

If your goal is to test treatment free remission (TFR), then I would mention it to your doctor at every visit with them.  Eventually they may become comfortable with the idea.  You would need their approval for this, as you should have PCR tests every month when beginning a TFR trial.

Vikram,

Since 400mg is the usual starting dose, it doesn't seem like an unreasonable idea.

You must tell your doctor though. It's important that they know what you are taking for treatment even if they don't fully agree. 

David

Thanks kirk and David

??????????????????

Hi vikram,apart from gleveek,what you did to get undetectable.what time do you take gleveek?

Aiims,delhi.
Today meet the docter,to continue 600 mg,next pcr in september.hoping for the good.how long you are taking giloy and other juice.do you face any side effect.

Yes....... Wheatgrass

And GILOY juice.......

Home made........

Not Market (market wala pure nahi jyada pani wala hota hai)

No side effects........

Natural....................

TRY.......