Results for the Leukaemia

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Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 4/28/2011 10:55 AM (GMT -6)   
Hey everyone,

Hope your having a low pain day! Just thought I would let you know how I'm going/what doctors have said!

I saw the oncologist this morning who was such a nice guy! Made me and Mum a lot more confident and the appointment a lot less scary and upsetting than we had thought.

Anyway he said that I have acute myelomonocytic leukemia. He didn't want to give us a prognosis at this stage as it is different for everyone, he wasn't confident I would be okay in the end but didn't say I wouldn't so I'm gonna go with I will be fine once I get through this :)

I am meant to start treatment in 2 weeks, which will be the first round of what he called induction chemo. But I have my year 11 exams in 3 weeks so going to try and start treatment once I have done these exams if I can stay well enough up until then! Finding it hard to decide what to do because year 11 is so full on so missing school will be hard, but I can't really just ignore this! So gonna try and keep up with school while missing it, I have a 50% chance of losing my hair, which I am pretty scared about because I have long blonde hair and really don't want to lose it! But that probably should be something I shouldn't be worried about haha. Anyway so the plan for my treatment is to have 2 rounds of chemo then see how that goes and if necessary have bone marrow transplant, I am going to have to have a blood transfusion soon and they are thinking I will probably have it next monday which is my birthday! :( Ohwell anyway just thought I would let you know about that all and will keep you updated!

Hope you are all doing okay :)

xx

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 4/28/2011 11:21 AM (GMT -6)   
 
 
        Morning Jess! wink
 
            Hey!...I guess "Sweet Sixteen" will  be here soon! smilewinkgrin
 
                  You do have a long road ahead, but I like the fact that you already have a Optimistic and Positive attitude. We too!... will hope for the best and remain opitmistic with you.
 
       I know the possible hair loss may bother you, but no one who knows you, will see you any differently.
 
            Suzane says your full of spunk, and thats a good thing when faced with such a trial in life.
 
      Take care, and know that you have the full support of the membership here. Prayers to you!
 
         SE wink
Moderator Chronic Pain Forum

"The clock is running. Make the most of today. Time waits for no man. Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why it is called the present."

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 4/28/2011 12:00 PM (GMT -6)   
baby girl, one thing you can be sure of is that hair grows back. its also more than ok to worry about it, as i have been advised many times in this forum, everything counts. you will always be in my prayers, you are so brave, i have so much admiration for you, even now at almost 58 you are braver than i am, when i was your age., decades ago i dont think i could be as brave as you. hoping and praying you are having low pain always.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

White Beard
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Date Joined Feb 2009
Total Posts : 3702
   Posted 4/28/2011 1:03 PM (GMT -6)   
buttercup
 
The treatment for this can be really rough, but you are young and strong, and have the right attitude, and you have all of us here that are supporting you! Keep your faith and you will get through this! One day at a time! Yes there is a chance that you will lose your hair, and when it comes back,  it may, or may not,  be different, but really in the  over all picture of it all,, this really is, a very minor thing, so do not let this get you off focus on your end goal, and that is beating this thing! Wear a hat or something, or a wig, or better yet,  just don't wear anything on your head, and be proud!    Proud,  to show that you are a fighter and you are fighting a battle, that few have ever had to fight, and you are strong and you will win and be victorious! Always remember that!
 
Good Luck to you! and Happy Birthday
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 4/28/2011 1:09 PM (GMT -6)   
Buttercup...

I admire your attitude very much.  For being so young - you are very wise.  I will be thinking of you and praying for you.... especially for strength to get through all you have going on.
 
Many special birthday wishes on Monday, too.... My oldest son just turned 16.... it's a special age.
 
Take good care....--Tina

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 4/28/2011 2:01 PM (GMT -6)   
Hi Buttercup. i can see that you're strong and are a fighter. You will come thru this with flying colors. I wouldn't worry too much about your hair, as others have said, it will grow back. I wish you all the luck in the world. Happy Birthday for next Monday. Sweet 16 is a special age. Think about your birthday Monday while you're having the treatment, maybe that will help you take your mind off of things a little. You take good care, and keep us updated when you can. I hope you're having low pain days.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

_Dex
New Member


Date Joined Apr 2011
Total Posts : 13
   Posted 4/28/2011 4:26 PM (GMT -6)   
Hey buttercup. We haven't met yet, but I've got AML too!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 4/28/2011 5:21 PM (GMT -6)   
Right here to support ya, and your young and strong to beat this...
Was nice to see you in chat and with your attitude you can beat this and
we'll be here with many many prayers...
Good luck on the year 11 exams...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

suesueky
Regular Member


Date Joined Apr 2011
Total Posts : 87
   Posted 4/28/2011 5:47 PM (GMT -6)   
Hiya Buttercup

I can see from your posts that you are a strong willed and happy go lucky young lady with the strength to get through this long journey. I would not worry about the hair sweetie I would take this as your time to try out different styles and colours that you have always wanted to try out, you can go and have a look at the fashion wigs and hats. My friend loved the chance of being able to change her appearance from day to day when she was going through her treatment. We will all be here for you lovie and I hope you have something nice planned for the evening of your 16th Birthday - Have a smashing day sweetheart. I am a teacher and I am sure that what ever you want to do about your exams will be fine with school and the examining board. You can try and take the exams or even put them off for a later date, but you are the most important person at the moment and exams can be taken again or later when you are through the treatment. You are a special young lady with a lot on your shoulders at the moment, keep the happy go lucky out look to life sweetie and remember we are all here for you always (((((((((hugs))))))))))) you will be in my prayers and thoughts lovie xxxxxxxxxxxxx

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 4/29/2011 1:55 AM (GMT -6)   
Buttercup,
I told you my sister developed ALL ( Acute lymphocytic Leukemia) and in her case, they didn't expect her to survive, but she did and you will too! She lost her hair but she got a wig and it looked exactly like her own hair and when her's grew back it was a bit curlier than her formerly straight hair but it looked just the same.....so don't worry too much. She said that when she started to loose her hair, she decided to just have it all cut off and go with the wig....in fact, she still loves her wig!
Anyway, the prognosis for you is pretty darn good.....80% survival rate for those 60 and older and for younger people it's higher than that....so hang in there and know that we are all here to offer you support and hugs, and love ......
Sending up prayers for you,
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

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Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 4/29/2011 6:33 AM (GMT -6)   
Thankyou everyone for your lovely replies :) it really really does lift up my spirits and help me stay strong to just see how much everyone here cares! So thank you all so much :)

If I lose my hair I can easily get a wig, always wanted to die my hair so I guess I can see this as an opportunity to test things out!

I had another appointment with my other doctor to try sort out other health issues which didn't go as well as planned, he's not really sure if there is any treatment for whatever is going on and thinks I most likely have chronic fatigue now aswell! But having more tests to figure that one out, I will explain more about this later but I'm getting pretty tired now!

Again thank you all for your support and I will let you know whats happening, spoke to the oncologist today and I am being admitted to the hospital and starting chemo in 4 weeks

Love you all so much
xx
15 years old,
Chronic stomach pain with no diagnosis yet and lots of other things.

When the going gets tough, the tough get going.

Trudy2
Regular Member


Date Joined Dec 2010
Total Posts : 213
   Posted 4/30/2011 7:16 AM (GMT -6)   
Buttercup,

Chronic fatigue comes with the AML. When you get the blood transfusion, you will have more energy. Being low on red blood cells naturally saps all of your energy.

When I was diagnosed with AML I was in the hospital and getting chemo within 2 days. So it sounds like they have caught yours fairly early - always a good sign!

I also had long hair and ended up losing it all. It never really hit home that I had cancer until my hair started to fall out and I could see it on the pillow every minute of the day. I had a fellow AML patient cut my hair to shoulder length so that I wouldn't notice it so much on the pillow and that helped a lot as well as having the nurses change the pillowcases several times a day. If you would like to get a wig, it can be charged to insurance if it is billed as a hair prosthesis. I think that is the correct wording. But I am sure where ever you check into getting a wig will know all the ins and outs of it. I went bareheaded and was happy with that.

I also liked my hair short for a few years after treatment - I found it much easier to take care of. I am now back to my original style of nice, straight, long hair. It does grow back and even if it grows back differently (color, curly, straight, etc...), it normally changes back to your normal within a year.

Hope all this helps! Keep up the great attitude as that is what you need to get you through!

Trudy
DX pyoderma gangrenosum, Acute Myelogenous Leukemia, Bone Marrow Transplant, Chronic Pain syndrome, Chronic Kidney Disease Stage 3, Major Depressive Disorder, Radiculopathy, Bilateral Hip Pain, Insomnia,Left Groin Hernia, Bulging Disk in Lumbar Spine, Tear in Lumbar Spine, Tendonitis and Bursitis in both hips.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/30/2011 9:04 AM (GMT -6)   
Jess, I'm sorry about your diagnosis, but from what I've seen of your postings here you are one tough cookie!!

Hair - I had lovely, long hair for most of my life, then lost most of it because of illness and the resultant malnutrition. I ended up shaving mine rather than waiting for it all to fall out and once I regained some weight it grew back beautifully. I keep it short/cropped, but it's thick and curly

All the best with your exams and your treatment

*gentle hugs*

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

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Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 4/30/2011 10:27 AM (GMT -6)   
Trudy - Thanks for your reply, its good to hear from people that have been through it too and can reassure me everything is going to be okay :) Yeah I'm more worried about the shock of my hair being gone and what people will think of me.. I just find when someone is really sick friends seem to drift away because they are scared, I have an amazing group of friends that are so supportive but we are at the age where there will always be the close ones but others might walk away. Anyway thanks for your reply and I hope your doing okay, look forward to getting to know you :)

Laura - Thankyou also for your reply! Hopefully I will be confident enough to not get a wig but if not I will always be able to get one! Hopefully my hair will grow back fine :) Hope your having a good day!

xx
15 years old,
Chronic stomach pain with no diagnosis yet and lots of other things.

When the going gets tough, the tough get going.
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