(((survive)))

[alawe]

Hi
i am ali and 27 years old .1 years ago i understand i have MDS 5q del. when i use (((http://www.mds-foundation.org/ipss-r-calculator/)))
result show me 8 years to survive.
what that mean???? 8 years later i am die??? or my MDS go to AML???what happen if i dont use any treatment???
pleas hellping me to know .
i cant speak english well. short abd simply answering.
thank you very much.

[Greg H]

Hi Alawe!

You should ignore life expectancy data. They are based on averages and have little meaning for individuals -- particularly someone as you as yourself.

Are you having no treatment now?

Take care!

Greg

[alawe]

Hi Alawe!

You should ignore life expectancy data. They are based on averages and have little meaning for individuals -- particularly someone as you as yourself.

Are you having no treatment now?

Take care!

Greg

hi Greg
i know that is averages .no i dont have any treatment now .
but i want to know what is mean???
just tell me
thank you very much geg

[Greg H]

Hi Alawe,

Sorry. The "survival" number is the number of years of life expectancy until death.

The AML/25% number is the number of years it took for one quarter of patients in that category to convert from MDS to AML.

Take Care!

Greg

[alawe]

Hi Alawe,

Sorry. The "survival" number is the number of years of life expectancy until death.

The AML/25% number is the number of years it took for one quarter of patients in that category to convert from MDS to AML.

Take Care!

Greg
OMG!!
Thank u greg
thank you for your Precision

[Lifeguard]

Hi Alawe,

I have Del5q too and have had it for 5 years.

I take Revlimid (Lenalidomide) which works well for our type of MDS.

The survival %s are not so accurate for young people because we do not tend to have other medical issues.

And your young so a Bone Marrow Transplant may be another option for a cure.

Rachael

[Lifeguard]

Hi Alawe,

Sorry, Just read your signature, with "boycott No treatment".

It's good that you are treatment free.

I needed transfusions early because my red and white cells dropped too quickly.

Revlimid has allowed me to be active again.

Hope all goes well Alawe.

Rachael

[alawe]

Hi Alawe,

Sorry, Just read your signature, with "boycott No treatment".

It's good that you are treatment free.

I needed transfusions early because my red and white cells dropped too quickly.

Revlimid has allowed me to be active again.

Hope all goes well Alawe.

Rachael

Hi racheal thank you for reply
yes you know my problem is boycott.if i want to bring revlimid from another country it is very expensive and i can not.any way i just wait .but i hope all and special you get better.and enjoy life.if you do your transfusion tell me i wait for you.Notify me of ok??
thank you.

[alawe]

hi
i have question...
is MDS Related with Lymph gland ؟؟؟
my Lymph gland inflated and i have pain???
is that because i have MDS???
Any one have experience ??/

[alawe]

Hi
can any one hellp me to know what is the normal rang of pathologis???
any site or Source to show normal rang??
my result:
Erythroblast:53%
Myeloblast:0.5%
promyelocytes:1.5%
myelocytes:11.5%
metamyelocytes:5.5%
bands:6.5%
PMNs:22%
megakaryocytes:0.5%
M/Eratio:0.9
cellularity: 35-40%
is my result fine???

[sstewart09]

I'm sorry I don't have a site to give you, but as far as cellularity goes, I was told that it should be 100-your age. If this is true, then your should be 70-75%. Hope this helps a little.

[alawe]

hi thank you .
i need mor info can any one hellp.my dr don't tell me any thing.i need to know.

[Bambam]

hi thank you .
i need mor info can any one hellp.my dr don't tell me any thing.i need to know.

Aka we, have you tried asking questions of your doctor? Is he a hematologist? If he won't give you information, is there a chance you could see a different hematologist? Hope you can get the answers you need for reassurance.

[alawe]

Aka we, have you tried asking questions of your doctor? Is he a hematologist? If he won't give you information, is there a chance you could see a different hematologist? Hope you can get the answers you need for reassurance.
hi yes i tried a lot of and questions of him.and he just said me "yes " no" come one month later" i tell you and some thing like that....
and he is a good dr
any way thank you.now i am study hard to book and web and article and...
special marrowforums hellp me a lot.i mean study to found my question.

[alawe]

hi
i am sorry for my ridicule question .the truth is i can't speak english well.
thanks to google translate.
any way i have question again.
now i am ok and dont have any problem with my MDS.
now i dont use any drug or blood transfusions.
my dr tell me now i dont need i am ok.
my question:
what is Symptoms MDS ?
i mean what happen for me ?
Dizziness
Nausea
Unconscious?
what doing MDS to die down people??
sorry again and thank to all.

[Birgitta-A]

Hi alawe,
You know the symptoms of MDS are caused by low counts - that is low hemoglobin, low white blood cells or low platelets. In the bone marrow they find misshaped young blood cells.

If the hemoglobin is low we feel tired, breathless etcetera

If the white blood cells are low we can get infections.

If the platelets are low we can get bleedings.

The most common death cause in MDS is heart problems - remember that MDS patients hardly ever are as young as you but perhaps 50 years older.

The second death cause is leukemia - when they look at the bone marrow they find more than 20% blast cells - immature blood cells.

Then some patients get infections like pneumonia, that is difficult to treat.

Another death cause is bleedings due to the low platelets.

It is common that MDS patients with good counts don't need any treatment.

Kind regards
Birgitta-A

[alawe]

Hi alawe,
You know the symptoms of MDS are caused by low counts - that is low hemoglobin, low white blood cells or low platelets. In the bone marrow they find misshaped young blood cells.

If the hemoglobin is low we feel tired, breathless etcetera

If the white blood cells are low we can get infections.

If the platelets are low we can get bleedings.

The most common death cause in MDS is heart problems - remember that MDS patients hardly ever are as young as you but perhaps 50 years older.

The second death cause is leukemia - when they look at the bone marrow they find more than 20% blast cells - immature blood cells.

Then some patients get infections like pneumonia, that is difficult to treat.

Another death cause is bleedings due to the low platelets.

It is common that MDS patients with good counts don't need any treatment.

Kind regards
Birgitta-A
thank you thank you thank you....
that help me good.
i ask a lot .you know in iran not any sit or weblog or article for MDS in persian . now i get information about MDS from marrowforums and translate to persian . and i make a weblog to hellping patient
that is my weblog
http://myelodysplastic.blogfa.com/

[Birgitta-A]

Hi alawe,
Very interesting! Of cause I can't read a single word but I saw that you have a link to Marrowforums.
Kind regards
Birgitta-A

[alawe]

hi again
yesterday i gone to my dr...he is crazy .now my wbc very low . ANC 600. he tell me next month i give you thalomid . I have MDS 5q del.
is thalomid good for me??
every month he forget i am 5qdel.i remember him.
pleas any one
is thalomid good for me??
:mad:

[Bambam]

hi again
yesterday i gone to my dr...he is crazy .now my wbc very low . ANC 600. he tell me next month i give you thalomid . I have MDS 5q del.
is thalomid good for me??
every month he forget i am 5qdel.i remember him.
pleas any one
is thalomid good for me??
:mad:

Hello Alawe, I wonder if you can request a second opinion. It is really important that you have confidence in and trust your hematologist. I assume your doctor is a Hematologist and not a family doctor? If you think your doctr is crazy and he has to be reminded about your diagnosis, it's time you ask yourself if he is the right doctor for you. I have a wonderful hematologist who listens carefully and asks lots of questions. You deserve this too. Good luck ... Let me know what you think of this idea ...

[alawe]

Hello Alawe, I wonder if you can request a second opinion. It is really important that you have confidence in and trust your hematologist. I assume your doctor is a Hematologist and not a family doctor? If you think your doctr is crazy and he has to be reminded about your diagnosis, it's time you ask yourself if he is the right doctor for you. I have a wonderful hematologist who listens carefully and asks lots of questions. You deserve this too. Good luck ... Let me know what you think of this idea ...
hi Bambam and thank you for reply
i visit my dr every month and first i trust him . tow month ago when i ask him about revlimid he told me not good for you . it is for 5q del.i wonder and told him i am 5q dell , then he remember . again , yesterday i told him i have 5< blast and he forget that again . i cant change my dr it is hard to me . i just need to dr listen to my talk good and answering my question . like your dr Bambam :) .
what your idea???

[Birgitta-A]

Hi alawe,
Revlimid is the best drug for patients with the 5q del.
http://www.ncbi.nlm.nih.gov/pubmed/23432724

I have understood that it will be very expensive for you. I have never read anything about Thalidomide and the 5q del - I don't think it will work as well as Revlimid.
Kind regards
Birgitta-A

[alawe]

Hi alawe,
Revlimid is the best drug for patients with the 5q del.
http://www.ncbi.nlm.nih.gov/pubmed/23432724

I have understood that it will be very expensive for you. I have never read anything about Thalidomide and the 5q del - I don't think it will work as well as Revlimid.
Kind regards
Birgitta-A
hi Birgitta-A
thanks for link . i wish if i can get revlimid i believe the revlimid good for me .
like you i don't think the thalomid is good for me. i don't know what i have to doing i confused.
pleas any one have info about thalomid.
is it good for me???

[alawe]

hi
right now i am not feeling good. i have many Mouth ulcers...i have pain and my dr tell me i have get revlimid.but the same problems...bycot..
now my ANC 410
and my neutrophil 14%

[Birgitta-A]

Hi Alawe,
It is strange that you are offered Thalidomide but not Revlimid when you live in a country like Iran with good doctors. As other members have written you should try to find another hematologist. Here is a doctor in your city: http://rct.ajums.ac.ir/_rct/documents/Dr.Najmaldin%20Saki(CV%202012).pdf

The company who makes Revlimid (Celgene) can have a program for compassionate prescriptions for patients who can't afford Revlimid.

Mouth ulcers is not a positive sign - they probably depend on the low ANC. Perhaps you could get Neupogeninjections for the low White Blood Cells.
Kind regards
Birgitta-A

[Chirley]

Hi alawi, sorry you're not feeling well.

I don't understand. Are you refusing Revlimid or is Revlimid not available in Iran?

Regards

Chirley

[alawe]

Hi Alawe,
It is strange that you are offered Thalidomide but not Revlimid when you live in a country like Iran with good doctors. As other members have written you should try to find another hematologist. Here is a doctor in your city: http://rct.ajums.ac.ir/_rct/documents/Dr.Najmaldin%20Saki(CV%202012).pdf

The company who makes Revlimid (Celgene) can have a program for compassionate prescriptions for patients who can't afford Revlimid.

Mouth ulcers is not a positive sign - they probably depend on the low ANC. Perhaps you could get Neupogeninjections for the low White Blood Cells.
Kind regards
Birgitta-A
hi
oh my god i live in ahwaz and i cant find dr like that....i dont know him...how you find it???but i want to call him
is thalomid good for me???
about Celgene i hope they can help me...i want to call him too.
any way thank you very much my freind

[alawe]

Hi alawi, sorry you're not feeling well.

I don't understand. Are you refusing Revlimid or is Revlimid not available in Iran?

Regards

Chirley
hi thank you for replay
not available in Iran .

[Chirley]

Hi alawe,

I apologise for my ignorance. I just read an article about the lack of medicines in Iran due to sanctions imposed on your Government and the suffering of innocent people as a result.

It's so sad when civilian populations suffer due to politics.

I hope you can get the Revlimid directly through your doctor and Celgene. I wish you all the best.

Regards

Chirley

[alawe]

Hi alawe,

I apologise for my ignorance. I just read an article about the lack of medicines in Iran due to sanctions imposed on your Government and the suffering of innocent people as a result.

It's so sad when civilian populations suffer due to politics.

I hope you can get the Revlimid directly through your doctor and Celgene. I wish you all the best.

Regards

Chirley
hi Chirley
and thank you.
yes now it is very hard time and people suffer and even die because no drug available in Iran.
i have question
you and Birgitta-A talking about (Celgene) .
is that company??? and how they can help me??
what i have to do??
thank you
i hope some day no boycott in world for any reason
Regards

[Neil Cuadra]

Biotechnology company Celgene (http://www.celgene.com) has a Patient Support Program (http://www.celgenepatientsupport.com) to help people in the U.S. get access to their drugs, including Revlimid. I don't know if they have similar programs in other countries but you can contact them at patientsupport@celgene.com to ask about it.

[alawe]

Biotechnology company Celgene (http://www.celgene.com) has a Patient Support Program (http://www.celgenepatientsupport.com) to help people in the U.S. get access to their drugs, including Revlimid. I don't know if they have similar programs in other countries but you can contact them at patientsupport@celgene.com to ask about it.

hi neil and thank you
i contact them and i wait now to answering.