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Oh no...prayers needed.

December 30th, 2008, 04:58 PM
I'm so scared.

Our family doctor called us today, my dads blood test (routine) was abnormal. His white blood cell count was through the roof. He wouldnt tell me my mom but told my dad and told him he wouldnt lie to him, its an indication of leukemia.

How everything changes in an instant. The doctor advised him to cancel his travel plans, little bro will be travelling alone. He is being referred to a hematologist.

Oh God. Your prayers please. :pray:

December 30th, 2008, 05:01 PM
Oh no, could it be something else :fingerscr :pray:. Maybe an infection somewhere?

December 30th, 2008, 05:10 PM
My thoughts and prayers are with you :pray::pray::pray:

:fingerscr for it being something harmless :fingerscr

:grouphug:'s to the onster family

December 30th, 2008, 05:14 PM
I hope so L4H, I really hope so. He is asymptomatic otherwise though, so I dont know :shrug:

I tried looking it up a bit..looks like it would be Chronic Lymphocytic Leukaemia....those at risk are males over 60 and it often first shows up in routine blood check.

Trying not to freak out..but way for the family doctor to freak us out. All he says is "its indicative of leukemia" "postpone your travel plans indefinately"

Its hard not to freak out :o

I sincerely hope Im getting myself worked up for no reason.

December 30th, 2008, 05:14 PM
I have to stay away from google.

December 30th, 2008, 05:16 PM
I have to stay away from google.

Yes, it can set a person into a panic needlessly.

I hope it is nothing :grouphug:

December 30th, 2008, 05:40 PM
thnks guys....i just needed to tell someone because I cant tell family (well they already know but i mean were not talking about it now) and friends, its too we still dont know exactly whats going on pending further tests.

No more google...

Jim Hall
December 30th, 2008, 05:59 PM
well you got it early and you have a good docter i would think

December 30th, 2008, 06:02 PM
You got mine. :pray::goodvibes::fingerscr

December 30th, 2008, 06:09 PM
:pray: Hope things go good for your Dad!

Yes, do stay away from google for medical issues.....just too many sites and you really cannot diagnose an ailment online. Talk to the Drs who know your Dad, they are the ones that should be able to give you detaills!!!

Sending lots of prayers and positive thoughts to you and your family :pray:

December 30th, 2008, 06:18 PM
Onster, I know it's easier said then done, but please try not to worry too much. And yes, stay away from google cuz you'll be considering the worst case scenarios. Let the doctors figure out what's going on. I'm assuming your dad has regular physicals and blood tests so, whatever it is, it's detected early which is a good thing. So it's good, ok? Stay positive so your dad will feel all the good vibes. :grouphug:

December 30th, 2008, 06:23 PM
Onster add our prayers and good wishes and vibes. Try not to freak out until you get all the test results, could be his body is fighting off an infection.:grouphug:

December 30th, 2008, 06:29 PM
I'm with the others onster , wait until your dad goes for some more tests. Doctors always make it sound worse than it already is , to make sure their patients go for more tests.

many many good vibes from me :goodvibes:


December 30th, 2008, 06:32 PM
Onster I am with everyone else here in wanting to send you good vibes for your Dad! But listen you have to wait and see what is said. Sometimes it is bent out of proporation or mistakes are made. Perhaps things affected the bloodwork like stress and stuff....

Thinking of you and your family!


December 30th, 2008, 06:44 PM
Onster sending you good vibes from here that is something else less serious.or like Winston said something like stress affected the testing.

December 30th, 2008, 06:55 PM
Thanks guys :grouphug::grouphug:

I feel like Im in the twilight zone.

My dads been on the computer, sending out work emails, giving instructions to everyone....he's very proactive and says he justs need to keep the ball rolling in his absence but im just like woah woah, everything is fine, u know? My mom is acting like everything is fine and keeps telling my dad "see I told you not to drink too much coffee" "its probably the coffee" . Lil bro and I are basically just silently freaking.

My dad has always had anemia but they never gave him a reason why (he had extensive testing way back).

The reason Im more scared is cuz the family doc said the last time he had this tested was in 2001. Even though my dad has had checkups since then, but i guess they did not have a full panel??

Keeping postive that its just nothing :fingerscr

December 30th, 2008, 07:44 PM
:grouphug: Scary times, onster...but try not to dwell on it till the tests come back. Ya, I know...easier said than done :o...but there's no sense in worrying yourself sick before you even know exactly what you're dealing with. If he's been asymptomatic otherwise, then whatever it is has been caught early.

You have our :pray:s and all the :goodvibes: we can muster are winging your way! :grouphug:

December 30th, 2008, 07:48 PM
onster take a deep breath and relax until your dad has further test. there are other causes for a high white count. i've been there done that with my older daughter when she was 2 and had one virus after another, her white count was sky high and the doctor warned me it could be cancer but when they retested her 6 weeks later everything was fine. hopefully that will be the case with your dad.

December 30th, 2008, 08:30 PM
:grouphug::pray: :goodvibes: Crossed :pawprint:s and :fingerscr: and whatever else you need!

December 30th, 2008, 10:00 PM
Onster, I know exactly what you are going through. :grouphug:

Sending lots of prayers and good wishes to you and your family. :pray: :fingerscr :goodvibes: :fingerscr :pray:

December 30th, 2008, 10:41 PM
Onster, lots of :pray::fingerscr and :goodvibes: coming your way for you and your family.

I know it's hard, but try not to think about it - hopefully it's not serious

December 30th, 2008, 11:09 PM
:pray: :goodvibes: :fingerscr and :grouphug: for the Onster family

December 31st, 2008, 09:17 AM
Add my prayers to the list!! :pray: And remember, MEDICINE ISN'T MATH !! That means that 2 and 2 don't always add up to 4 in a diagnosis. It could be pointing to leukemia and still not be leukemia. Or it could be leukemia and he could respond beautifully. Cancer is NOT an automatic death sentence. And trust me, google could scare you to death !!

In March of 2000 I was given about 8 months to live and here it is almost 9 years later and I am happy, healthy and cancer free !! If you want to pm me I'll be happy to tell you some of the things we learned that made a HUGE difference when it came to choosing the right facility, getting the most accurate diagnosis etc.

I don't want to bore everyone here but there are a few things that many people neglect to do that can make all the difference in the world. I was lucky that a woman on the next block called me and told me what she had learned and gave me some great advice that probably saved my life.

I'm praying hard for your family and if there is anything I can do to help just let me know.

December 31st, 2008, 09:19 AM
Thanks all. I really do believe in the power of collective prayer. I'm more clear headed today (I was constantly having to excuse myself yesterday to let out a few tears:o) Thank God for everything...I have to keep saying that. I do believe were never given anything we can't handle, so right now all I can say is thank God for our blessings - who knows maybe something bad would have happened if my dad travelled.

December 31st, 2008, 10:06 AM
My thoughts and :pray:'s are with you and your family Onster. Wait until all of the appropriate tests and the results are in before worrying :grouphug:

December 31st, 2008, 11:01 AM
Lots of :grouphug: and good vibes headed your way from my gang.

Waiting is the hardest part. :pray:

December 31st, 2008, 12:55 PM
So my dad picked his results up today...some good news, thank God. Our doctor was wrong over the phone and the last time my dad had this check done was Jan 07 and last year everything was perfect (which means he hasnt had this for a long time). IF the indication of the results are right, my dad has chronic lymphocytic leukemia, which is a very slow progressing leukemia. 1/3 of those diagnosed never need treatment, 1/3 need treatment within 2 yrs of diagnosis and 1/3 eventually need treatment.

I feel much better.

Keeping fingers crossed and prayers that whatever is best will happen.

December 31st, 2008, 01:19 PM
We had a friend who was treated successfully for a more aggressive form of leukemia. They swear by Fred Hutchinson Hospital (clinic? hospital? I can't remember the exact name) in Seattle Washington. Just throwing that out if you're wanting to research facilities or get second opinions.

December 31st, 2008, 01:21 PM
thanks joeysmama.

From what I read, this type of leukemia actually has no cure, its more a wait and see approach in the early stages and then chemo/radiation to slow down the effects/ get rid of lumps that may show up later.

Its differrent than the acute leukemia where u can do a marrow transplant and such.

December 31st, 2008, 01:35 PM
I'm glad the news isn't "worst case scenario", Onster. We went through the same thing with my father-in-law 3 years ago. He was given 6 months to live back in 2005. Well, I'm happy to say, I spent the weekend getting the gears from him.

I remember when he was first diagnosed. They thought worst case scenario, and he had treatment even though I think he felt it was useless. I went nuts with google, found out that his cancer had a 9% survival rate, but I kept thinking about Lance Armstrong, who was given less than 2% then went on to win 7 Tour de Frances, and will be going for #8 this year. I don't know where I heard it, so forgive me for my plagerism but...where there's life, there's hope.

Though it sounds like things aren't as bad as feared, I'll be keeping you in my thoughts, sending your dad good vibes.

December 31st, 2008, 01:39 PM
Maybe no cure, onster, but definitely a better prognosis than was initially feared! :grouphug:

We'll keep the :pray:s and :goodvibes: comin'!

December 31st, 2008, 02:21 PM
Thanks for sharing Shwinn and thanks for your kind words everyone.

Was it the same type that father-in-law was diagnosed with?

The family doctor said it would take a week/two, even with him pushing for an earlier appointemnet, to get my dad into a specialist because its "non life threatening". My dad faxed the results to his good friend in minnesota (not a specialist but a very experienced doctor) who called my dad back and also reassured him somewhat.

Reading forums online, ive read people that were diagnosed 20 years ago and still going strong, just matter of checkups and leading healthy lifestyle....

So here's hoping and praying that if it is confirmed to be CLL, he is one of those lucky 1/3.

Its just weird/ again I find myself saying its like im in the twilight zone. Dads never get sick, u know :o. I think there was only one time my dad has ever had a fever/cold in my recollection. At most we thought the blood test would tell him he needed to watch his cholesterol....but again, thank God for everything.

December 31st, 2008, 03:10 PM
Glad to hear that things are sounding a little better for your dad. :thumbs up

Let's hope that he stays in the third that don't need treatment. :fingerscr :goodvibes: :grouphug:

December 31st, 2008, 03:13 PM
Onster - I have not commented until now however since I really don't have much input I do want you to know that I am thinking of you and your family. I pray for a speedy recovery and new found health for your father.

Best to you all.

December 31st, 2008, 07:12 PM
I just saw this. I will be keeping your dad in my prayers and crossing my fingers that the news continues to be good news for him. :fingerscr:goodvibes:

December 31st, 2008, 08:44 PM
*hug hug hug hug hug* oh honey, im so sorry im just seeing this. you are in my thoughts. i hope this is the best case.


December 31st, 2008, 10:06 PM
:thumbs up for you dad and his continued good health. :grouphug: for you.

December 31st, 2008, 11:04 PM
That is good it's not as bad as the doctor first said it was.and the good news keeps coming. and if it is CLL he is the 1/3 that won't ever need treatment.
:pray:for the best.

December 31st, 2008, 11:40 PM
I'm glad things look better onster , you said it yourself , your dad is never sick :goodvibes:

January 1st, 2009, 07:28 AM
Onster,I don't know much about Leukemia,did not really know what to say when you first told us,it is your loving dad after all and you were scared.
Now with the results in,things are looking better,not as serious as what you feared :pray:for you and your family:fingerscr

January 1st, 2009, 10:13 AM
Thanks everyone. I had a rough night, so much for being calm. lol Reading up on it just made my false hope go away reaaaal fast. It would be very rare, based on the results, that my dad has anything else.

*get bad thoughts out of my head*

thanks again all. I wanted to say that if I dont post reply here for a while its just that even though i started this thread, and you guys are being a great comfort, it seems the more I try to keep the tears at bay the more they come :o My eyes are really poofy as it is, I dont want to upset my family (im the super emotional one...I cry watching cartoons).

So I may not post here until I can get past this whirwind stage...still hoping for the best. I think ill just stick the to the pictures and LOL thread for now :)

January 1st, 2009, 10:14 AM
oh so that means u guys gotta post lotsa pictures, ok? :D

January 3rd, 2009, 10:08 AM
Onster, my prayers and best wishes to your father and your family.
Try to be positive, you have a lot of support here if you need it.

January 14th, 2009, 06:38 PM
So I was kind of avoiding posting here and trying to will this thing away.

Unfortunately didnt work out for me too well :rolleyes:

I'm less "AHHHHHHH" about it though, I chatted with my bros in Egypt, was good to talk with them. Also we told my gramma, my uncle etc. I told 2 of my good friends.

He had another CBC, wbc were slighting higher. Chest x rays perfect. FLOW test (shows if its really CLL), confirmed diagnosis. However, the one prognostic factor in it, looking for a protein called CD38 showed that it was negative, which is good. The more important prognostics are from FISH testing and mutational status but docs havent asked for this yet?!?

Im currently extremely frustrated with all that is the healthcare system. Sooo given all this and that they found a strange mass (4.7cm) above his liver with a CT scan AND a bunch of swollen lymph nodes and some cysts above his kidney (seriously when it rains it pours?!?) they wanted to give him an appointment in 3 + months.

This is without anyone going over the results with us or anything...all the info I have is from my own research and posting on a CLL forum. Like literally we were told "you may have leukemia, cancel your travel" "you do have leukemia..a specialist may be in 3 or more months. You can pick up copies of your tests if you like".

My dad's good friend, who is not a hematologist, was able to get him an earlier appointment with another hematologist (not the preferred one) on Jan 22nd. This doc asked for the CT scan and the flow test etc. Given that I know that the most important prognostic factors are the FISH and mutational testing im not pleased that he wasnt asked to go in for those tests because basically im pretttty sure he's gonna go to the hematologist and then the hematologist is gonna ask for those tests and then we'll just wait again.

At this point I just want to go to the mayo clinic in rochester and see an actual specialist and not wait a million days for testing.

Other than sounding completely bitter :D and pissed at the system...I'm good.

Im less freaked out now and less trying to be perfect around dad. I'm back to arguing with him, lol.

In a slightly very off in the future, panicky mode I keep thinking about the cats. Ive always heard that cats + cancer = not good.

All in all, this completely and utterly sucks. I'm still thankful though. I remember when my grandad :rip: had a stroke and my gramma kept wailing about how this was the worst possible thing....then he had to go for a triple bipass surgery, put things in perspective real quick. So, I'll take what Ive been handed out and Ill be thankful...but Im scared.

January 14th, 2009, 06:46 PM

January 14th, 2009, 06:47 PM
Is there anyway your dad can request the fish testing himself and have it sent to the hematologist he is booked in to see.

January 14th, 2009, 06:53 PM
:grouphug: I'm keeping good positive thoughts in my head for your dad.

January 14th, 2009, 06:55 PM
thanks guys :grouphug:

I dunno angeldogs, were having my dads doc friend over for dinner today. Ill ask him...he was the one who gave my dad the forms for the lab tests and all (i think it needs to be through a doctor). The FLOW test needed special papers from hematology though so they faxed it to him. It doesnt make any sense to me why he would see the hematologist without it? *unless* the doc isnt up to date on procedures because all the warnings ive come across on the CLL forum to make sure your doc knows what he's talking about. A lot of these tests are fairly new right so....if you have an oldschool doc who didnt keep informed, you can end up screwed. No way Im letting that happen though..hence the me researching and all.

We'll see...

January 14th, 2009, 07:00 PM
Traveling to the states seems like a mighty good option to me now though.....

I suppose we'll wait to the 22nd though and go from there.

January 14th, 2009, 07:08 PM
thanks AG

Ill update when new info comes about... :pray::fingerscr

January 14th, 2009, 07:40 PM
thanks guys :grouphug:

I dunno angeldogs, were having my dads doc friend over for dinner today. Ill ask him...he was the one who gave my dad the forms for the lab tests and all (i think it needs to be through a doctor). The FLOW test needed special papers from hematology though so they faxed it to him. It doesnt make any sense to me why he would see the hematologist without it? *unless* the doc isnt up to date on procedures because all the warnings ive come across on the CLL forum to make sure your doc knows what he's talking about. A lot of these tests are fairly new right so....if you have an oldschool doc who didnt keep informed, you can end up screwed. No way Im letting that happen though..hence the me researching and all.

We'll see...

That could very well be the reason the test wasn't ordered.the doc not being up to date.hopefully your dads friend might have some info for you.

January 14th, 2009, 08:55 PM
Traveling to the states seems like a mighty good option to me now though.....

Is that actually an option? We're not all that far from Rochester.

January 14th, 2009, 09:07 PM
That could very well be the reason the test wasn't ordered.the doc not being up to date.hopefully your dads friend might have some info for you.

Yeah, he just left. He basically told me that these things wont change the prognosis, so why does it matter? Well he's right it wont change the prognosis nor will it change the treatment options...but Id like to know if my dad has an aggressive form or not!!! I mean would u not want to know? I dont understand how you can not want to?...then again my dad's friend is old school too. I dont know, i feel like he is trying to sugar coat it...he said he has someone who comes to his clinic who has had CLL for 20 years. I know that and I pray so hard he's one of those, but I also now some people pass away in 5 like some indication, uknow? * ETA: and actually I read somewhere that based on what kind of DNA deletions/ mutations you have you shouldnt use a certain drug cuz it makes worse...but I dont know where I read that, need to look it up again*

He also said prognostic factors arent certain and I agree with that. How many people were told they have a few months and lived for years? But.....still Id like to know. So well see, Ill talk to the hematologist about it.

Is that actually an option? We're not all that far from Rochester.

Yeah. We almost booked, but then docs and ppl on CLL forum said to make sure you have a local hematologist/oncologist too cuz specialists may try to push studies on you (ongoing studies at mayo clinic and even the specialists disagree over course of action) so you need a doc that is not biased towards their own purposes. BUT my bros and I are adamant my dad goes to a prominent research centre, with specialists. The mayo clinic or MD Anderson seem the best options but we have friends in Minneapolis so we chose the Mayo clinic.

January 14th, 2009, 09:35 PM
Ya i would want to know how aggressive it is too.Atleast you got to ask your dads friend and got some answers.

So how is your dad doing and dealing with all of this.?.

January 14th, 2009, 09:51 PM
hugs to you.

i know it is hard but you also have to find out what your father wants and how far he wants to go in treatment if needed. what you want and what you father wants might be 2 different things and unfortunately you must respect his feelings.

we are all here for you.

January 14th, 2009, 09:54 PM
My dad is ok I guess. He hasnt been up to eating much though, he said he has no appetite since the news which is understandable. Were trying to get him to eat more..

He's upset that he told my lil bro to do co-op in egypt so he could be under my dad's wing (my dad's an engineer) then at the last minute he couldnt travel and my lil bro went alone. its not a big deal really, my bros are there with him (granted they know nothing bout engineering, lol).. but hes upset he broke his promise to take him here and there and show him this and that. We keep telling him thats so silly, but he's upset nontheless.

He started to give my mom his will but she would have none of it.

Mostly I think he just wants to go back to dad the workaholic eh, lol. All these things for work were in his head, 5 yr plans, 10 yr he wants to go back and put things in writing, so my bros are not lost after him.

I guess he is being practical, my dad is after all a planner, but its a bit much sometimes. I want to tell him to stop thinking like this but everybody has their own thing they have to deal with right...he wont be happy unless he plans.

I dunno...its a lot to digest...the hardest thing is that there is no cure. Were all doing ok though...I think this is all to expected with news like this. If anything I think its harder on us than my dad.:shrug:

January 14th, 2009, 10:00 PM
Oh and it helps that my mom and dad's faith is very strong.

Honestly I think my dad is being a bit too much 'gloom and doom' given that he could be fine for so many years but then I wasnt the one who was told I have cancer....:sad:

I did talk to him bout the prognostic tests, told him with all due respect im not convinced with what his friend said and he said if they refused to test here, then he'll do it in the states.

January 14th, 2009, 10:10 PM
It's a lot to get his mind around. It's very much akin to grieving a loss...he'll come around :grouphug: Being there for him will help a lot.

January 14th, 2009, 10:13 PM
Onster, I'm so very sorry. I'm just seeing this now. I'm right here in Minneapolis if you need anything at all. A place to stay, a ride, food, to talk...just let me know! :grouphug:

January 14th, 2009, 10:19 PM
If he feels up to it put him to work around the house to keep him busy.that just might build up his appetite.I can understand the being a workaholic and wanting to get back to work.

That is good their faith is real that can help people to cope with things like this.

With any luck they will do all the testing that you's want done as you want answers and deserve them.

January 14th, 2009, 10:43 PM
Thanks guys :grouphug:

please keep us in your throughts/prayers/good wishes/vibes :goodvibes:

Ill update for sure when we learn anything...

thanks for letting me vent/ talk things out. :)

i find its easier to talk about it here because so far I dont want to talk about it much. At least here I can ignore the thread for a while...but in real life, i dont want people to keep asking me about it, as well meaning as they are, its just too much for me now as were still coming to terms with it as a family.

its also hard being the only 'child' here now. I wish my bros were still here...3 heads (cuz lil bro is useless :crazy:) are better than 1.

January 15th, 2009, 07:39 AM
Onster,you have every right to be scared,the big C is a scary ugly word,but it does not have to be fatal,hopefully your dad will get a straight answer,so he'll know what he can expect.

January 15th, 2009, 07:45 AM
Onster I don't blame you for being so scared, I would be too :grouphug: :grouphug:. My parents feel the health care in the states is sooooo much better than here in Canada as long as you have insurance. The waiting time to see a specialist here in Canada is outragous.

Keeping you and your family in my prayers :pray:

January 22nd, 2009, 01:43 PM
Just back.

The hematologist and his nurse were sooo nice and reassuring. It was kind of daunting walking into the cancer centre, makes it even more real.

My dad isnt going on treatment now, will check his blood work every 3/4 months. The doc said until he starts having worse symptoms (hopefully he wont!) then they he doesnt advice us to the FISH test because its just added stress. However if it comes to the point where were considering treatment, we can by all means go ahead. I have to say, everyone at the cancer centre at Grand river was awesome.

Ive been loading my dad up on green tea because of ongoing clinical trials at the mayo clinic, the initial results of which are 'promising'. They are in phase II of the trials and some people have had significant reduction of lymph node swelling and symptoms having taken green tea.

My dads first CBC had his White blood cells at 25 (normal 4-11), second one was 30, 3rd 27.4) and today 24.8! :D Now, fluctuation is normal so docs werent really concerned about the 30 but I prefer to see downward fluctuation of course!!! Doc said he has some patients with WBC at 500, so he said tho my dad isnt normal its not very bad. He also said he knew someone who was diagnosed at WBC of 25 in '97 and right now he still has that count, with some fluctuation. Of course he told us it can progress to life threatening, but for now we have good news and no reason to freak out. So thank you, God , green tea, prayers and good vibes :goodvibes: :D :thankyou: Thanks everyone for all ure kind words and support :grouphug:

my dad is currently booking his flight to egypt..omg..ive never been so happy to put my dad on a plane :D

So yes, technically my dad has cancer but he has the best cancer possible and he is fine no, no need for treatment. Here's hoping it will remain that way :fingerscr.

January 22nd, 2009, 01:44 PM
Please keep those good vibes/prayers coming to keep symptoms at bay and WBC stable/low :goodvibes:

January 22nd, 2009, 01:48 PM
:pray::fingerscr:goodvibes: I know what you are going through. My sister and my mom in the last 4 years. May they both :rip:. It is a tough thing to deal with. Please know my thoughts are with you and your family. :grouphug:

January 22nd, 2009, 01:49 PM
That's good news. I think doing whatever he can to get some of natures medicine in him is also a good idea. I remember reading once, long time ago, some scientist said what we have to cure many diseases are in nature, we just haven't found them all yet. Makes sense.

I'll keep your dad in my prayers. :goodvibes:

January 22nd, 2009, 01:52 PM
Please keep those good vibes/prayers coming to keep symptoms at bay and WBC stable/low :goodvibes:

You've got all the :goodvibes: we can generate here, onster! :thumbs up

January 22nd, 2009, 01:55 PM
Woo Hoo for the good update :thumbs up and sending you and your family lots of good wishes that your dad's wbc count stays stable. :fingerscr :goodvibes: :fingerscr :goodvibes:

January 22nd, 2009, 02:03 PM
thanks guys :grouphug:

AG In islam we believe exactly that...that for every sickness there is a cure...we just havent foudn them all :thumbs up There is also another saying that the stomache is the home of sickness and cures......basically a lot of good things can come out of eating well :goodvibes: