Re: Daughter diagnosed with cml

[Guest guest]

Dawn:

First I am sorry to hear about your daughter having CML, I myself was

diagnosed 2 1/2 years ago, right before our third daughter was born. As a

parent,

I know it is really hard to see that your kids are sick, especially with

something as serious as CML. I too was told that I needed a bone marrow

transplant and would be out of work for a year, possibly two. However, the

front

line treatment of CML is medication, not a bone marrow transplant (BMB). There

are several drugs that are approved including Gleevec (I think it is Glivic

in the UK) and Sprycel, as well as another drug, AMN107 that is expected

sometime this year. All are very effective in the treatment of CML and do not

require the arduaous journey of a BMB. In fact, Gleevec has been found to be

effective for over 87% of CML patients.

If you Doctor said that a BMB is your first or only option, it may be time

to rethink which doctor you use. I was told the same thing and when I went to

a specialty cancer facility, they suggested that I get another

oncologist/hematologist to work with. It may be the same in your case,

although I am just

assuming since you did not post any of her details. However, if you case is

the same as mine, you do need to find a specialist in CML and one at a

Leukemia clinic, not a local doctor with CML experience.

I know the first days are usually dark ones and yes, it seems like you are

living a dream. But there is hope and once she adapts to the medication, she

will lead a happy, active life. Yes, there will be life changes, but it

seems to me that there always are. You will get some great feed back from this

site and lots of information. Take this information and go to your medical

team and make sure they act on it.

Remember, things are always darkest before the dawn. Once you get educated

and informed, you will find that there are some wonderful options out there.

You will also find love and support from all sorts of sources. During this

time, allow people to help you and show you that love, because they want to

help.

Just wait, you will see it will not be as bad as you imagined.

God bless,

Matt

Florida

Cancer Survivor since Janaury 2005

Father of 3

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi Dawn,

My son was 15 when diagnosed with CML. What a shocker, huh? I read a

lot of information and did a lot of research. We also took Tom to see

a CML expert (Dr. Druker in Oregon). I think that it was well worth

it to get a second opinion from a CML expert. Is your daughter on any

medicine for her CML? Is she taking Gleevec? Do you know what phase

of CML that she is in? Feel free to email me privately.

Barb Neddo,

Mom to Tom, 18

dx CML 8/04,

MUD BMT 5/05/05

http://www.caringbridge.org/wi/tomneddo

[Guest guest]

Hi Dawn,

I do understand you concern and am sorry that you needed to join this

group. We have a very knowledgeable group regarding CML. Do ask your

questions. We are anxious to hear the blood counts, stage of CML

right now. I think most of us has been told to think about BMT's.

Please research all of the options before agreeing with ONC. I was

diagnosed 4-1/2 years ago and have done quite well on the daily dose

of 400mg of Gleevec. There are several centers that have experts to

advise your ONC or for you to consult for a second opinion. Dr.

Druker is the #1 and was responsible for giving us hope by seeing that

we had Gleevec available to treat us. There are other drugs that are

also working. Keep us posted because each member here is a WARRIOR

and each caregiver is a SAINT.

Huffman

dxd 2/04

Gleevec 400mg 3/04

CCR 6/06

QAPCR-negative 11/05

-- In , " dawn_m_aldridge " <dawn_m_aldridge@...> wrote:

>

> Hi, my name is Dawn and my 15 year old daughter has been diagnosed

>ahead with a bone marrow transplant ne with CML within the last

couple of days.

[Guest guest]

Hi Dawn,

My son was 15 when diagnosed with CML. What a shocker, huh? I read a

lot of information and did a lot of research. We also took Tom to see

a CML expert (Dr. Druker in Oregon). I think that it was well worth

it to get a second opinion from a CML expert. Is your daughter on any

medicine for her CML? Is she taking Gleevec? Do you know what phase

of CML that she is in? Feel free to email me privately.

Barb Neddo,

Mom to Tom, 18

dx CML 8/04,

MUD BMT 5/05/05

http://www.caringbridge.org/wi/tomneddo

[Guest guest]

Barb Neddo <barb.neddo@...> wrote: Hi Dawn,

My son was 15 when diagnosed with CML. What a shocker, huh? I read a

lot of information and did a lot of research. We also took Tom to see

a CML expert (Dr. Druker in Oregon). I think that it was well worth

it to get a second opinion from a CML expert. Is your daughter on any

medicine for her CML? Is she taking Gleevec? Do you know what phase

of CML that she is in? Feel free to email me privately.

Barb Neddo,

Mom to Tom, 18

dx CML 8/04,

MUD BMT 5/05/05

http://www.caringbridge.org/wi/tomneddo

[Guest guest]

Hi Dawn...My name is ' and I was diagnosed with CML in Dec 2006. I am 38

years old and very active. I work a full time job, have two wonderful

daughters, 13 and 19. I also weight train a run 4-5 times a week. I have taken

Gleevec and am now on Sprycel. While taking the medicine, I am unable to work

full time, go to the gym, or live my life the way I always have due to the

fatige from the medication. I miss at least two days a week from work, and the

days that I do make it all day, I crash as soon as I get home. I also sleep all

weekend. With that being said, I have made the decision to go ahead and have

the Bone Marrow Transplant. My doctors at MD think that it is a great

idea due to the fact that I am so active. I will have the transplant done in a

couple of months. I am really looking forward to hopefully getting my life back.

Other patients may not feel the same as I do, and I absolutely believe that you

should do some more research, but I

believe that if it were my daughter, I would lean more toward the transplant,

due to her age. I cannot even imagine how you are feeling right now.

Good Luck with whatever decision you make.

Sincerely

'

dawn_m_aldridge <dawn_m_aldridge@...> wrote:

Hi, my name is Dawn and my 15 year old daughter has been diagnosed

with CML within the last couple of days. I am still in shock and so

is she, (she says its all like a dream) I know that we have a long

road ahead with a bone marrow transplant needed ithin the next 6

months. I just do not know if I am going to be able to be strong for

her. I am up and down and deciding if to give up my job and look

after her. She has took it on board and I think that she had accepted

it, but I am so angry that she has it! I have been told by the

consultants that it is very rare for a 15 year old to have this and

the chances look quite good for her but I am quite concerned about all

what she has got to go through. I also have two other kids that are

younger than her and I want to keep things as normal as possible for

them, but I am finding it very hard at the moment. If anyone else has

been in my position I would be grateful for any advice. Thanks Dawn

---------------------------------

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[Guest guest]

Hi Dawn

My 23 year old son, , was diagnosed last year with cml. He is

doing absolutely great! The gleevec has worked very well for him and

his side effects are really minimal.

That word 'normal' is a word from pre-cml for us. He will never be

normal again - but always BETTER Than Normal now! :-) Better and

stronger than old normal. He has a really good attitude in his life

and so many things have improved for him since cml entered it. He has

grown, has learned to live on a deeper level and appreciates so much

more since his diagnosis. It's really great to see.

I remember also being angry at his diagnosis. I wanted to take it away

from him, I bargained with God to give it to me and then (to be

specific) started listing the things that I did not want to get

in its place - well, I gave upon that! and now I am truely grateful

(with all due respect to all of you with cml) that he 'only' has cml.

does not even want to think of a transplant at all, he says that

he likes the idea of it being like a spare tire - staying in the trunk

of the car only to be used in emergencies! I agree with him

wholeheartedly! There are so many good meds out there that are working

for cml and as long as the meds work - leave it there. And, as someone

else said, please get a second opinion, or change your doctor if they

are pushing for a transplant at this stage.

To get rid of my angers and 'scareds' I started writing a blog which

allowed me to vent and get those feelings out of me.

www.livingwithcml.blogspot.com - feel free to read it if you want to.

When I first started down this road of cml it felt like a very lonely

place. My friends and family could not understand the feelings that

went with it, so I am tremendously fortunate to have found this and

other groups/boards that have caregivers and mothers and cml-ers that

totally 'get it'. For this I will always be grateful too. When I

needed to get the encouragement and guts to change doctors, it came

from these boards, when I needed some information that was up to date

and valid, it came from these boards, and when I just needed someone to

hold my hand - yup - back here again..... And all this has helped

in that he has a calmer, more informed mama with a support group

like nothing I could have imagined! :-)

These early days are difficult and scary for you and your family, but

it does get easier as you get to learn about cml. Up to date knowledge

is true power. And its this power that will make you strong and able

to deal with it - even though its something that none of us ever wanted

to be strong enough for. You will be there for her, you will be strong

enough - you are her mom.

Feel free to email me privately through the blog any time you want to.

love and light

Annie

's mom

www.livingwithcml.blogspot.com

>

> Hi, my name is Dawn and my 15 year old daughter has been diagnosed

> with CML within the last couple of days. I am still in shock and so

is she, (she says its all like a dream) I know that we have a long

> road ahead with a bone marrow transplant needed ithin the next 6

> months. I just do not know if I am going to be able to be strong

for her. I am up and down and deciding if to give up my job and look

after her. She has took it on board and I think that she had accepted

it, but I am so angry that she has it! I have been told by the

consultants that it is very rare for a 15 year old to have this and

the chances look quite good for her but I am quite concerned about all

what she has got to go through. I also have two other kids that are

younger than her and I want to keep things as normal as possible for

them, but I am finding it very hard at the moment. If anyone else has

> been in my position I would be grateful for any advice. Thanks Dawn

>

[Guest guest]

Hi, Dawn,

I don't post often but I looked in today and saw your post. I, too,

have a daughter with cml - she was 19 when diagnosed in Dec. '05. Her

Platelets were over 2,000,000 and her WBC was 10 times the 'normal' -

(I forget the actual number) - she had to undergo 3 leucopheresis

treatments, where they suck the extra platelets out of your blood -

lots of different meds to bring her platelet count down, and finally

she settled down and has a nice CCR going - after getting used to

Gleevec. She does have some side effects, but they have somewhat

lessened with time; she is doing fine. I saw that some of the others

told you about Dr. Druker, in Oregon; as we live within 3 hours of

him, we have been able to go see him and his amazing nurse Carolyn 2

times. He reassured (my daughter) that there is every hope of

living a normal life, and that it made sense in her case to NOT jump

on the BMT train, but as Annie's son said, to keep it as a

back-up. (Spare tire? -thats a good one!)

The first few months are the most frightening, no doubt. I'm glad you

got online and found this group - that was a wise thing to do! Be

really careful about what you read on the internet - some of it is

very outdated (pre-Gleevec) and you will only get more frightened

when the truth is, there is so much hope nowadays - I'm sure your

daughter will do just fine.

You will be strong enough for her - otherwise you wouldn't have

gotten online to learn as much as you could, right away. I will tell

you - a week after my daughter was diagnosed, my dad was diagnosed

with another cancer - so I went in and had myself put on

antidepressants as it felt like too much for me to cope with at the

time (a move I would NEVER have seen myself taking, prior to all of

this) - and I am so glad I did. It IS a lot to cope with, especially

when you have additional, younger children (I also have a younger

daughter).

Anyway, I wanted to let you know, you are not alone!

Love, Debbie

--- In , " dawn_m_aldridge " <dawn_m_aldridge@...>

wrote:

>

> Hi, my name is Dawn and my 15 year old daughter has been diagnosed

> with CML within the last couple of days. I am still in shock and

so

> is she, (she says its all like a dream) I know that we have a long

> road ahead with a bone marrow transplant needed ithin the next 6

> months. I just do not know if I am going to be able to be strong

for

> her. I am up and down and deciding if to give up my job and look

> after her. She has took it on board and I think that she had

accepted

> it, but I am so angry that she has it! I have been told by the

> consultants that it is very rare for a 15 year old to have this and

> the chances look quite good for her but I am quite concerned about

all

> what she has got to go through. I also have two other kids that

are

> younger than her and I want to keep things as normal as possible

for

> them, but I am finding it very hard at the moment. If anyone else

has

> been in my position I would be grateful for any advice. Thanks Dawn

>