What now?

[Guest guest]

Dear Sandy and Dave,

My heart goes out to you and your son. I just had a myotomy and I hope and pray it will be the answer. I can only imagine the heartbreak if it is not, especially for a child.

There are people here who are going through the same thing with their child, and also adults who have lived with achalasia since they were children.

You will find a lot of good people and good information here.

Kathy

Washington

What now?

My son was diagnosed with achalasis 5 years ago at the age of 7. He had surgery (Hellers Myotomy) and had very little trouble until recently. Because he was not growing/ gaining weight, his physician repeated a gastric emptying, UGI and manometry. This week we were given the bad news... the achalasia is back and his esophagus has no peristaltic contractions. We will speak to a surgeon later this week, but right now I am beside myself. I have never visited this website before, let alone posted a message. Is there anyone out there that has had this happen to them? What can be done? I would appreciate any help/info.

[Guest guest]

Hi,

I just posted a long reply to this which seems have destroyed!

In essence - my daughter was diagnosed at 5y6m and had her lap

Hellers at 5y8m. Symptoms returned within 2 months.

I've been searching at www.pubmed.com for more info and came up with

a list of studies relating to secondary treatments. I've attached

the references after my sig.

It is useful to read the dull articles, I find, if you can get access

to them. They explain why the surgery failed e.g. too short myotomy,

faults with the fundoplication/wrap, etc and what strategies were

useful afterwards.

Good luck with deciding on treatment. Our surgeons should be

discussing Stephi's case on Thursday.

--

Sue

Mum to Stephi 6yo

Nottingham, UK

Pediatr Surg Int 2001 Sep;17(7):505-7

Pneumatic dilatation for childhood achalasia.

Babu R, Grier D, Cusick E, Spicer RD.

Department of Paediatric Surgery, Royal Hospital for Sick Children,

Bristol, UK.

Eur J Pediatr Surg 2001 Aug;11(4):223-9

Achalasia in childhood: surgical treatment and outcome.

Karnak I, Senocak ME, Tanyel FC, Buyukpamukcu N.

Department of Pediatric Surgery, Hacettepe University Medical Faculty,

Ankara, Turkey. ikarnak@...

Ann Surg 2002 Feb;235(2):186-92

Etiology, diagnosis, and treatment of failures after laparoscopic

Heller myotomy for achalasia.

Zaninotto G, Costantini M, Portale G, Battaglia G, Molena D, Carta A,

Costantino M, tti L, Ancona E.

Department of Medical and Surgical Sciences, Clinica Chirurgica IV,

University of Padova School of Medicine, Padova, Italy.

Arch Surg 2001 Aug;136(8):870-7

Laparoscopic Heller myotomy and Dor fundoplication for achalasia:

analysis of successes and failures.

Patti MG, Molena D, Fisichella PM, Whang K, Yamada H, Perretta S, Way

LW.

DIg Dis Sci 2002 Nov;47(11):2538-43

A review of achalasia in 33 children.

Hussain SZ, R, Tolia V.

Department of Pediatrics, Children's Hospital of Michigan, 3901

Beaubien, Detroit, Michigan 48201, USA.

Surg Endosc 2002 May;16(5):772-6

Redo laparoscopic surgery for achalasia.

Gorecki PJ, Hinder RA, Libbey JS, Bammer T, Floch N.

Department of Surgery, Mayo Clinic ville, 4500 San Pablo Road,

ville, FL 32224, USA.

J Laparoendosc Adv Surg Tech A 2001 Dec;11(6):351-9

Minimally invasive surgery for esophageal achalasia.

Zaninotto G, Costantini M, Molena D, Portale G, Costantino M,

tti L, Ancona E.

Department of Medical and Surgical Sciences, Clinica Chirurgica IV,

University of Padua, School of Medicine, Italy.

[Guest guest]

I wrote, at way past my bedtime, obviously: ;-)

> It is useful to read the dull articles, I find, if you can get

access

> to them.

Ooops - fumop - this was meant to say 'full articles' although 'dull'

may be correct in some cases - I only have copies of two so far!

--

Sue

[Guest guest]

Dear Sandy and Dave,

I must admit,although I am a member of this group I am usually shy

about posting but felt that I had to respond to you. I, too, have a

12 year old son with achalasia. He was diagnosed at age 9 and had an

esophageal dilation that relieved his symptoms for almost three

years. he underwent his 2nd dilation about three months ago, and is

gaining weight and feeling well now. Our gastroenterologist felt

satisfied that the results of the procedure lasted three years, but

we know that we may have to have surgery eventually. The idea of

surgery was not even offered to us at first.

I wish I had some great advice for your course of treatment for

your son. All I know for sure is that this condition does not go away

by itself, it is chronic. I just wanted to let you know that I know

what you are going through. Please feel free to e mail me anytime. I

live in Massachusetts and we go to Children's Hospital in Boston.

Good Luck,

[Guest guest]

It could be a reaction from Paxil to the other medication I would call

the doc and ask if the behaviors you mentioned are possible side

effects. My son has been on Ritalin (Metadate) for the last 4 years

(he just turned 13). We have tried other meds but he also seemed to

have adverse reactions, this one has worked out the best. He was

spitting them out at the beginning of the school year and was getting

C's and a couple of D's. Now he is getting A's and B's with help from

the resource teacher (has IEP). Hope this helps, Sue

>

> Hi all,

>

> I need help. I have been trying for years to do the right thing with

> my HFA son who is now 9. Sometimes I think I did the right things,

> sometimes the wrong ones. We got a diagnosis when he was 4, did our

> best to get the right schools, got speech and OT services from

> schools, did our best to read and think and supplement school

> services at home, did music therapy and social skills groups and

> speech and everything that was available. We kept getting praise

> from everyone for all that we did but we felt like nothing really got

> at our son's essential resistance to/disconnection from everything.

> Example: he loves music but couldn't do music therapy because it

> was " too exciting " and he couldn't attend to the therapist. We had a

> daughter 20 months younger who couldn't stay out of hte way and

> jumped on and took over all efforts at home play therapy. We got an

> ABA counselor to run playdates with him, but it was hard to feel like

> there was progress there. We decided the school system was

> inadequate and we moved to a different city for a new

> experimental " model " asperger program run by people we knew. It was

> a complete bomb. We moved him again, this time seeing a good

> psychiatrist and getting him on ritalin which helped a lot (this is

> one of hte topics I would like to explore with this group), and I

> wished I had tried it years before when I'd had a hunch I should,

> because it seemed like suddenly he was learning all this stuff he

> COULDN'T learn before becuase he COULDN'T pay attention. Socially and

> academically both.

>

> This year we felt pretty good -- things were going great in his new,

> easygoing, general special ed school, a happy place with many

> different special needs mixed together. He was going to the after

> care programs and participating (swimming, drama, etc.) He was

> expressing interst in having friends.

>

> But in the last few weeks -- actually soon after a shift from Paxil

> to Citalopram -- there have been two new scary developments -- the

> worsening of an obsession with (it used to be just a wild story

> about) an unreal character who is " trying to take over hte world, " an

> obsession which led our son to threaten a neighbor if the neighbor

> didn't yield information about him. And, maybe related, a really big

> regression into complete spaciness and isolation. He says he can't

> get thoughts out of his head. He talks to himself almost constantly

> for certain stretches of the day. He doesn't want to talk about the

> thoughts. They could be about the evil character, or they could be

> about prehistoric beasts and mammals and dinosaurs -- his special

> interest.

>

> I am desperate, and I feel like I'm going back to the drawing board.

>

> So I need to know if there's anyone out there I can compare notes

> with. I'm interested in profound attention problems in otherwise

> really smart/curious/academic HFAers, and I'm interested in ritalin

> and its ups and downs, and I'm interested in obsessiveness and its

> relationship to autism and to ritalin, and I " m interested in what

> other antidepressants anyone out there may have combined with ritalin

> in a way that alleviates the obsessiveness it may spark.

>

> I'm also interested in WHAT TO DO when you already have bad habits of

> action, or rather inaction, at home. What do you do when your son

> has a habit of spending way too much time walking around talking to

> himself, and it's really just almost impossible to pull him out of

> it? I can pull him out -- to do legos or build something or dance

> around -- but sometimes I CAN'T.

>

> Sorry this is so long and is such a blurt-ish post. I haven't done

> this kind of group in over a year, and I haven't read anything in

> over a year (lots of exhaustion and stress from move and new job

> etc.), but now I need to get back into it.

>

> Thanks in advance for anyone out there who will respond to any of the

> above.

>

>

>

[Guest guest]

But in the last few weeks -- actually soon after a shift from Paxil to

Citalopram -- there have been two new scary developments

as the changes came after the med switch did you contact his dr it sounds

like this is the wrong med for him and to continue it would be dangerous

[Guest guest]

Ritalin has worked very well with us. My son is on Concerta which is a long acting form of Ritalin. It may not be right for everyone since it is for ADHD. It also has side effects. It is a form of "speed"Autism and Aspergers Treatment From: suebee@...Date: Sat, 29 Mar 2008 16:23:36 +0000Subject: Re: what now?

It could be a reaction from Paxil to the other medication I would call

the doc and ask if the behaviors you mentioned are possible side

effects. My son has been on Ritalin (Metadate) for the last 4 years

(he just turned 13). We have tried other meds but he also seemed to

have adverse reactions, this one has worked out the best. He was

spitting them out at the beginning of the school year and was getting

C's and a couple of D's. Now he is getting A's and B's with help from

the resource teacher (has IEP). Hope this helps, Sue

>

> Hi all,

>

> I need help. I have been trying for years to do the right thing with

> my HFA son who is now 9. Sometimes I think I did the right things,

> sometimes the wrong ones. We got a diagnosis when he was 4, did our

> best to get the right schools, got speech and OT services from

> schools, did our best to read and think and supplement school

> services at home, did music therapy and social skills groups and

> speech and everything that was available. We kept getting praise

> from everyone for all that we did but we felt like nothing really got

> at our son's essential resistance to/disconnection from everything.

> Example: he loves music but couldn't do music therapy because it

> was "too exciting" and he couldn't attend to the therapist. We had a

> daughter 20 months younger who couldn't stay out of hte way and

> jumped on and took over all efforts at home play therapy. We got an

> ABA counselor to run playdates with him, but it was hard to feel like

> there was progress there. We decided the school system was

> inadequate and we moved to a different city for a new

> experimental "model" asperger program run by people we knew. It was

> a complete bomb. We moved him again, this time seeing a good

> psychiatrist and getting him on ritalin which helped a lot (this is

> one of hte topics I would like to explore with this group), and I

> wished I had tried it years before when I'd had a hunch I should,

> because it seemed like suddenly he was learning all this stuff he

> COULDN'T learn before becuase he COULDN'T pay attention. Socially and

> academically both.

>

> This year we felt pretty good -- things were going great in his new,

> easygoing, general special ed school, a happy place with many

> different special needs mixed together. He was going to the after

> care programs and participating (swimming, drama, etc.) He was

> expressing interst in having friends.

>

> But in the last few weeks -- actually soon after a shift from Paxil

> to Citalopram -- there have been two new scary developments -- the

> worsening of an obsession with (it used to be just a wild story

> about) an unreal character who is "trying to take over hte world," an

> obsession which led our son to threaten a neighbor if the neighbor

> didn't yield information about him. And, maybe related, a really big

> regression into complete spaciness and isolation. He says he can't

> get thoughts out of his head. He talks to himself almost constantly

> for certain stretches of the day. He doesn't want to talk about the

> thoughts. They could be about the evil character, or they could be

> about prehistoric beasts and mammals and dinosaurs -- his special

> interest.

>

> I am desperate, and I feel like I'm going back to the drawing board.

>

> So I need to know if there's anyone out there I can compare notes

> with. I'm interested in profound attention problems in otherwise

> really smart/curious/academic HFAers, and I'm interested in ritalin

> and its ups and downs, and I'm interested in obsessiveness and its

> relationship to autism and to ritalin, and I"m interested in what

> other antidepressants anyone out there may have combined with ritalin

> in a way that alleviates the obsessiveness it may spark.

>

> I'm also interested in WHAT TO DO when you already have bad habits of

> action, or rather inaction, at home. What do you do when your son

> has a habit of spending way too much time walking around talking to

> himself, and it's really just almost impossible to pull him out of

> it? I can pull him out -- to do legos or build something or dance

> around -- but sometimes I CAN'T.

>

> Sorry this is so long and is such a blurt-ish post. I haven't done

> this kind of group in over a year, and I haven't read anything in

> over a year (lots of exhaustion and stress from move and new job

> etc.), but now I need to get back into it.

>

> Thanks in advance for anyone out there who will respond to any of the

> above.

>

>

>

Test your Star IQ Play now!

[Guest guest]

I can't speak to when you should tell someone you have CLL as I'm not a person living with CLL. But as a family member of someone who has CLL, but I'd be pretty devastated if I wasn't told asap. I believe it is always easier to battle something with someone by your side. If I was not told as soon as he found out it would be very hard on me. We just lost my brother to multiple myeloma a short time ago and while I thought we (my family) was off the 'cancer train' after that for a while but that wasn't to be. That being said, it would have been more difficult for me to not be told than to be told.

I also think it is very important to have someone who is not the patient be present at all doctors appointments to make sure that accurate notes are taken etc.

Lori R & The Fur Kids

ARFs German Shepherd Rescuewww.arfrescue.com2nd Chance Service Dogswww.secondchanceservicedogs.comFull member, Association of Pet Dog Trainerswww.apdt.com*do not forward or cross post anyinformation contained herein withoutpermission

Become the person your dog thinks you are!

RE: What now?

,

I had a similar experience. When I was diagnosed, my father and a dear friend were both in the end stages of cancer. I couldn’t bear to tell either one – and my children were deeply affected by my father’s decline. So, I procrastinated for 2 years in telling anyone in my family. I told a few close friends, joined a neighborhood support group lead by leukemia & lymphoma society (meets once a month) ….joined this/our wonderful chat group (thank you Dr. Furman and )….and – after suffering alone with my fears – finally told my children, family, etc.

What a relief! Tell them now –they will understand, be supportive, and, hopefully, you won’t need much else for a long time.

Best wishes,

Bonnie

From: [mailto: ] On Behalf Of TRUDY SHAFERSent: Wednesday, July 01, 2009 9:08 AM Subject: What now?

-When I was newly diagnosed w/SLL in 2007, I struggled w/ the same burning question. I had a sister who was 3000 mi. away (east coast) also struggling w/ cancer (not lymph.or leuk.) at the time, and was becoming more and more unstable, and, since I was on w+w, I thought it best not to give her (or my other relatives back east) any additional stress. She passed away in Dec., 2008 - never knowing I also had cancer. But, not telling took more out of me for months (and 2 yrs. in the case of my sister) than it may have affected them - and ultimately, when I finally told, they were all glad I told them. However, I don't know your particular relationship with your family - perhaps, if you feel comfortable, you may be able to enlighten us re any issues that may be causing you to hesitate to reveal what's going on w/you. And, by not telling, you may be missing the much needed support you can receive from those close to you. Also, one never knows how soon treatment may have to start - depends on a lot of things - and will be different for each person. So, in my opinion, the short answer to your question is, yes, tell them.Hope this helps.Trudy

I am using the Free version of SPAMfighter.We are a community of 6 million users fighting spam.SPAMfighter has removed 3012 of my spam emails to date.The Professional version does not have this message.

[Guest guest]

,

I

had a similar experience. When I was diagnosed, my father and a dear friend

were both in the end stages of cancer. I couldn’t bear to tell either one

– and my children were deeply affected by my father’s decline. So,

I procrastinated for 2 years in telling anyone in my family. I told a few close

friends, joined a neighborhood support group lead by leukemia & lymphoma

society (meets once a month) ….joined this/our wonderful chat group

(thank you Dr. Furman and )….and – after suffering alone with

my fears – finally told my children, family, etc.

What

a relief! Tell them now –they will understand, be supportive, and,

hopefully, you won’t need much else for a long time.

Best wishes,

Bonnie

From: [mailto: ] On Behalf Of TRUDY SHAFER

Sent: Wednesday, July 01, 2009

9:08 AM

Subject: What now?

-

When I was newly diagnosed w/SLL in 2007, I struggled w/ the same

burning question. I had a sister who was 3000 mi. away (east coast)

also struggling w/ cancer (not lymph.or leuk.) at the time, and was

becoming more and more unstable, and, since I was on w+w, I thought

it best not to give her (or my other relatives back east) any

additional stress. She passed away in Dec., 2008 - never knowing I

also had cancer. But, not telling took more out of me for months (and

2 yrs. in the case of my sister) than it may have affected them - and

ultimately, when I finally told, they were all glad I told them.

However, I don't know your particular relationship with your family -

perhaps, if you feel comfortable, you may be able to enlighten us re

any issues that may be causing you to hesitate to reveal what's going

on w/you. And, by not telling, you may be missing the much needed

support you can receive from those close to you. Also, one never

knows how soon treatment may have to start - depends on a lot of

things - and will be different for each person. So, in my opinion,

the short answer to your question is, yes, tell them.

Hope this helps.

Trudy

[Guest guest]

,

This is a question perhaps answered by the others with CLL, but as a physician,

I believe that it is always important to be open and honest with your family

regarding matters such as these. The important thing to emphasize is that even

with today's standard treatments, you will be around for a very long time.

What is more important, is that there are a number of agents in clinical trials

now that are having a major impact upon the longevity of people with CLL.

Additionally, you will be around to take advantages of the discoveries that are

to be made over the next decade.

There is a great deal to be hopeful about, and it is important to make sure your

family knows you are always being honest with them and never hiding anything.

You do not want them thinking things are worse than they are.

Rick Furman, MD

>

> I was recently diagnosed with CLL. My count is 50,000. My question is this:

should I burden my family with this news even though it may be years before I

need any care?

>

>

>

[Guest guest]

,

There are so many things to be considered! What do you mean by family?

Parents? Children?

The main reason to wait would be so that you know more about your

disease and have a chance to get used to the idea. That way when you

tell your family, especially if there are children involved, you can

speak from much more confidence and knowledge.

The main reason to tell them now would be if not telling them feels

burdensome to you! If you need their support and yes, sympathy. If

you hate keeping secrets. If you notice your attitude has changed and

how you're behaving. With children, are you fathering them as well or

are you preoccupied and worried? If so, and it persists, that would

be a good reason to tell them..

I was one of two very young daughters whose father had CML (back in the

1940's) and it was kept a secret from him and from us. It affected all

of our family relationships. Knowing might have explained a lot since

he was sick a fair amount and took steroids that changed his face, etc.

My sister and I were afraid—but had nothing to " pin in on. " Someone

I know with very slow, mild CLL waited about 5 yrs to tell her grown

sons. She was not overly concerned about the CLL and preferred to have

things as normal as possible, especially since she knew she could

behave perfectly normally since that's how she really felt. As I

remember, they took it very well and weren't angry she hadn't told

them sooner. She's still doing very well. Hope this gives you food

for thought. Please say more about your situation -- your age, if

there are children and if yes, how old, etc.

-Ellen Diamond

On Jul 1, 2009, at 11:11 AM, skiserdds@... wrote:

>

>

> I was recently diagnosed with CLL. My count is 50,000.  My question is

> this: should I burden my family with this news even though it may be

> years before I need any care?

>

>

>

>

[Guest guest]

,

I meant to save this, not send it. I thought I'd wait until perhaps

others asked about your family and then I could be more specific.

But...apparently my unconscious finger wanted me to send it. Since

then I've read Dr. Furman's post, which I think contains very basic

truths that agree with my " reason to tell them now. "

Begin forwarded message:

> From: Ellen Diamond <e.diamond@...>

> Date: July 1, 2009 5:17:17 PM EDT

>

> Subject: Re: What now?

>

> ,

> There are so many things to be considered! What do you mean by

> family? Parents? Children?

>

> The main reason to wait would be so that you know more about your

> disease and have a chance to get used to the idea. That way when you

> tell your family, especially if there are children involved, you can

> speak from much more confidence and knowledge.

>

> The main reason to tell them now would be if not telling them feels

> burdensome to you! If you need their support and yes, sympathy. If

> you hate keeping secrets. If you notice your attitude has changed and

> how you're behaving. With children, are you fathering them as well or

> are you preoccupied and worried? If so, and it persists, that would

> be a good reason to tell them..

> I was one of two very young daughters whose father had CML (back in

> the 1940's) and it was kept a secret from him and from us. It

> affected all of our family relationships. Knowing might have

> explained a lot since he was sick a fair amount and took steroids that

> changed his face, etc. My sister and I were afraid—but had nothing to

> " pin in on. " Someone I know with very slow, mild CLL waited about 5

> yrs to tell her grown sons. She was not overly concerned about the

> CLL and preferred to have things as normal as possible, especially

> since she knew she could behave perfectly normally since that's how

> she really felt. As I remember, they took it very well and weren't

> angry she hadn't told them sooner. She's still doing very well.

> Hope this gives you food for thought. Please say more about your

> situation -- your age, if there are children and if yes, how old,

> etc.

> -Ellen Diamond

> On Jul 1, 2009, at 11:11 AM, skiserdds@... wrote:

>

>>

>>

>> I was recently diagnosed with CLL. My count is 50,000.  My question

>> is this: should I burden my family with this news even though it may

>> be years before I need any care?

>>

>>

>>

>>

>

[Guest guest]

While I don't know your circumstances, and hence what is appropriate for

you, what I can offer in response to your question is my own experience:

my wife was with me from the first visit to the oncologist after my GP

found an elevated white count. That was over 6 years ago, and she has

been with me with enormous support ever since; through chemo, and its

aftermaths, etc. I have also been very open with friends and other

family members.The support of friends, and concern of relatives have

helped tremendously, both with my state of mind, and with helpful

suggestions and support, and knowing there are those who care and are

concerned. There are practical issues here as well: insurance forms that

will be seen; the need for driving support coming home from chemo, etc.,

meds sitting around the house. To me, though, telling others has helped

me to much more easily get through the stage of denial that something

was wrong. Hope this is useful.

Newman

>

> I was recently diagnosed with CLL. My count is 50,000. My question is

this: should I burden my family with this news even though it may be

years before I need any care?

>

>

>

[Guest guest]

:

It takes a while to get used to the new diagnosis. When you yourself

feel a little steadier, think about how you will feel if you don't tell

them, and how you will feel if you do tell them. You might feel like

not telling them today, and by tomorrow (figuratively speaking) the

picture may have changed. That's normal, and very human.

If there are children, regardless of their ages, if they see you

reconciled to and realistic about what you're facing, they will take

their cue from you. (That goes for friends and other adults, too.) No

one can reassure them like you. And no one else can adequately do it if

you don't.

I have adult children, one with a family of his own. I waited a few

years before I felt ready to tell them, partly because at first I felt

the disease was " indolent " and I wasn't allowing it to occupy my

thinking--once the first shock had worn off. When the numbers began to

climb, keeping the news from them started to feel like a burden, and I

no longer wanted to bear it. Both my sons wished I had told them

earlier but understood that I was not ready. Since then it has become a

non-issue for them. If and when I have news--a change, a need for

treatment--they know I will tell them. But for the rest, it's all very

undramatic--something I never thought possible.

My husband knew from the beginning and accompanied me to my first

hematological exam. He's been a great support--hears me when I need to

report on a result or exam--and mainly gets on with his life. That's

the great advantage of telling your family--they can get used to it and

get on with their lives. (And by the way, so can you!) When you need

support, they are there. But you will have given them a great gift by

sharing your news, your fears and concerns. (I found I could keep these

last to a minimum with my family. A therapist helps.) I think we human

beings are programmed to make the best of things. It's amazing what we

can live with and still live fairly normally.

Speaking as one who as a child was deprived of knowing one of my

parents was mortally ill with leukemia--over a period of 6 or 8

years--I must say that the secret marked my life. (The news was also

kept from the patient. Things were so different then.) I vowed I would

never keep bad news from my mate or my children. And they have rewarded

me for telling them with the most unbelievably mature--not to say

nonchalant!--behavior I ever could have imagined. And the great plus

is, they know and can be of real help and support. It's a win-win, if

such can be said about this situation.

I wish you good luck and as much clarity of thinking and feeling as you

can muster.

On Wednesday, July 1, 2009, at 08:11 AM, skiserdds@... wrote:

>

>

> I was recently diagnosed with CLL. My count is 50,000.  My question is

> this: should I burden my family with this news even though it may be

> years before I need any care?

>

>

>

>

[Guest guest]

Hi :

I was diagnosed last August and am on W & W. My doctor called me into her office after a routine CBC and told me to bring my husband with me, so I knew it must be bad news. I was worried about telling the kids because one daughter was pregnant. Her brother-in-law had passed away only a few months before at age 35 of cancer, and he had been sick all through her first pregnancy. So I did not want her second one to be spoiled by the news.

I did however tell her because I relized she would be hurt if I didn't, and as she is a veterinarian who treats CLL in animals she volunteered to be with me at the doctors office as often as I needed to ask the questions. The other kids have been equally supportive, and so has my husband. It has been so much easier going through this knowing how much they care. The only person in the family I haven't told is my 94 year old father who lives in another country and is not too well himself.

A number of my friends also know, but I have a caveat about that. If you belong to a number of large social groups as I do you may find it hard to have everyone constantly ask you how you are. After all on W & W I may get a bit more tired than I would without the CLL, but that is it. So all I can say is I have good days and bad days like everyone else. Some people want a lot of detail and I am not prepared to give just anyone those details. So other than family, if I had to do it again, I would look carefully at which of my of friends and acquaintenances I would tell, and be very careful about that. I don't want to think about the disease all the time, I am too busy living well in whatever time I have, so to talk about it constantly which their kind inquiries force me to do, is not in my best interests I don't think.

Regards Sylvia

From: skiserdds@... <skiserdds@...>Subject: What now? Date: Wednesday, July 1, 2009, 3:11 PM

I was recently diagnosed with CLL. My count is 50,000. My question is this: should I burden my family with this news even though it may be years before I need any care?

[Guest guest]

New Friends, I am overwhelmed with the caring response I have received from everyone. The sting associated with my doctor's announcement "you have cancer" is still there but I can at least talk about it with my wife now without falling apart. A few of you have asked for more information regarding my family and I. Fortunately, only two of my four kids still live at home and the youngest just turned 18. It was actually my family doctor, who has been a close friend for 25 years, who offered the suggestion that I not burden my kids with something that is not creating issues at this time. He followed this up with "unless you need some attention". Ouch! his last word of advice really pinched because attention is not what I need. What I need is for this whole thing to go away. I have been a dentist for 25 years and during this time I have only missed about 7 days of work. Illness is something I have never personally dealt with. I work out 6 days a week and race competitively as a road cyclist. I began having symptoms about 6 months ago and since then I have been trying to self diagnoses my problem. The night sweats had me convinced that I was becoming diabetic so I ordered an A1c for myself and It came back negative. It was actually a very attentive PA that looked back through past blood tests and discovered the upward trending WBC. To complete my story I feel that it is important to share that both of my parents died at an early age of cancer. My mother died from AML and the specialist I am seeing actually cared for her. I made a commintment to my kids that I was never going to allow that to happen to me. 20 years ago I began a regiment of antioxidants, vitamins, exercise, and a diet of only foods that are "good for you". I have never smoked and gave up all alcohol. You know this whole thing really bites because even after all that a reality of just how venerable we really are has set in and remove the big superman "s" from my chest.Thanks for caring enough to read my posting and for all your suggestion. Re: What now?>> ,> There are so many things to be considered! What do you mean by > family? Parents? Children?>> The main reason to wait would be so that you know more about your > disease and have a chance to get used to the idea. That way when you > tell your family, especially if there are children involved, you can > speak from much more confidence and knowledge.>> The main reason to tell them now would be if not telling them feels > burdensome to you! If you need their support and yes, sympathy. If > you hate keeping secrets. If you notice your attitude has changed and > how you're behaving. With children, are you fathering them as well or > are you preoccupied and worried? If so, and it persists, that would > be a good reason to tell them..> I was one of two very young daughters whose father had CML (back in > the 1940's) and it was kept a secret from him and from us. It > affected all of our family relationships. Knowing might have > explained a lot since he was sick a fair amount and took steroids that > changed his face, etc. My sister and I were afraid—but had nothing to > "pin in on." Someone I know with very slow, mild CLL waited about 5 > yrs to tell her grown sons. She was not overly concerned about the > CLL and preferred to have things as normal as possible, especially > since she knew she could behave perfectly normally since that's how > she really felt. As I remember, they took it very well and weren't > angry she hadn't told them sooner. She's still doing very well. > Hope this gives you food for thought. Please say more about your > situation -- your age, if there are children and if yes, how old, > etc.> -Ellen Diamond> On Jul 1, 2009, at 11:11 AM, skiserdds@... wrote:>>>>>>> I was recently diagnosed with CLL. My count is 50,000. My question >> is this: should I burden my family with this news even though it may >> be years before I need any care?>>>> >>>> >------------------------------------

[Guest guest]

Hi all,

I havent posted on the forum for ages as I have been awaiting my endocrinologist

appt, which I had earlier this month. Anyway, I was in touch and received some

very useful advice from members several months ago. I have 2 young children

and, having virtually no milk after each of them were born, I started to

investigate my thyroid function as a possible cause for this. I am constantly

tired and continue to dread the day my elder daughter drops her daytime nap.

I had a blood test in June and my TSH was 3.42. So, having had some advice and

information from forum members, I wrote a letter to my GP expressing my concern

for risks of miscarriage, premature labour and other problems with my TSH at

this level if we have more children.

My GP referred me to an endocrinologist, who I saw recently. He looked at my

blood results and examined me and, basically, said I was normal and fit and

healthy and that no endocrinologist in this country or abroad would put me on

thyroid medication with a TSH at this level. And that he was not concerned

about any risks re further pregnancies. But he did take more bloods, the

results of which are:

TSH 3.9

Free T4 11

Free T3 4.4

Thyroid antibodies results not yet back.

He has since written to me saying the results are, so far, all normal and he

doesnt need to see me again.

I am, on the whole, very fit and healthy, but I need 11 or more hours sleep a

day in order to not feel tired and rough all day. And thats getting harder as

the children get older.

I don't think I am getting any worse, and this is not a new problem. I have,

since I was a teenager, needed far more sleep than most people, but I just

accepted it until I began to investigate my thyroid function in January this

year.

So I don't know what to do now. I really want to have more energy, and I am

still concerned about the risks of pregnancies with a high TSH such as mine. I

have had 2 miscarriages already. (not that I have the energy for any more

children at the mo but I cant help wanting more than the 2 we have now)

Any advice would be greatly appreciated, as I now feel that I am a bit stuck. I

cant see any point in seeing a different endocrinologist, even a private one, as

I get the feeling the response will be the same as the one I saw on the NHS. I

have read about self medicating natural thyroid replacement but, obviously this

would be a last resort, and I'm not sure if this would be the right thing for me

to do or not?

Thank you very much for your help

From a tired