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23 with leaukemia All

Emilie23
Posts: 5
Joined: May 2013

Hi new to this just seeing if there was anyone out there who wanted to chat. Currently in my 1st yr of maintence after being diagnosed 28th december 2011. Dont have anyone i can talk to as im the youngest on my ward with this type of cancer as i did not want to be transfered to teenage ward at another hospital as at the time of diagnosis my son was only 8 months old. Would be great to hear others experiences etc

Thanks :)

nempark
Posts: 580
Joined: Apr 2010

Hi Emilie:  I am only responding to you because I know you are looking for answers.  From your diagnosis date, I think you are doing very well.  You mentioned that you are on maintenance, that is great.

My daughter was diagnosed on Nobember 22, 2011 just one month before  you.  Unfortunately, she did not do well at all.  

I hope you continue to do well and I would love to know where you were treated.  I wish you continued good health.  Enjoy your son and the rest of the family. Keep in touch. This is a tough board, you hardly every get any responses.

Emilie23
Posts: 5
Joined: May 2013

Hi thanks for replying. I hope your daughters ok now? 

Yes thinks seem to be going good i try to remain as positive as possible maybe to much sometimes like i forget im still undergoing chemo etc. I live in the uk so not sure if you would know the hospital. Just feel very alone though :( i dont like talking to my parents or friends as i hate seeing them upset. I just get up and get on with it but its so enotionally and physically drainning. I feel like this maintence stage of 4 weekly chemo/steroids takes it out on me alot more than the intense.

Think my main concern is the future. As for now im doing my hardest to beat this and fortunatly have been in remission from my first intense chemo round and therefore did not need to have a BMT. Abd the day i got told i told myself i would not let it beat me in anyway, maybe thats why im coping so well. Everyday i get told how fantastic i look and you wouldnt think anything only the headscarves give it away. I surely dont feel like this constantly drainned & tired lol especially having my two year old to run around after.

But let me get back to my point im just extremly anxious about the future. I can never seem to find anything on life expextancy the strain of the chemo on your body, replapsing , chances of developing another cancer! Because my god i honestly dont think i could ever do this fight again in my life! 

Thankyou so much for replying and listening to me bang on. Hope to speak soon

Emilie x

noelletea
Posts: 4
Joined: Mar 2013

Hi Emilie! It's hard to find other people will cancer who are young (and not children). There's a good website though that's just for young adults w/ cancer, here: Stupid Cancer. If you've never heard of it, it's a good resource because everyone gets what you're going through. It's so different having cancer in the beginning of your adult life, unlike older adults and kids.

Emilie23
Posts: 5
Joined: May 2013

Thankyou i will look into this. Sorry for late reply

DRGabrielse
Posts: 1
Joined: May 2013

 

Hi, I am new to this group. 

I was treated for ALL Leukemia at age 7 back in 1975.  I have had very few noticeable long-term effects despite being on maintenance doses of cytoxin and methotrexate for nearly six years.  One was stopped after I developed a seizure allergy and the other after some massive burns to my face; that one was six years out.

Since then, the two things I have noticed is that I cannot reproduce and my hearing is poor. 

I remember two things from way back then.  One is that when my parents took me to the hospital on Halloween Night I knew that I was in trouble when the sixth doctor came to examine me.Surprised  The other was when they were treating my spinal cord/CNS late in my treatment.  After every other day lumbar punctures for a week, the doc became nervous that I was suffering paralysis of my legs.  After consulting with other docs he ordered another lumbar puncture to test for meningitis.  I specifically remember that because I thought  "Are you dumb?  Of course if you stick a needle in my spine three times, I am going to have trouble walking." Frown Blessedly, I returned to school three weeks later.Laughing

Randy

Emilie23
Posts: 5
Joined: May 2013

Thankyou for your reply and sorry for my late reply.

So glad to hear you are doing well after such a traumatic ordeal. Im still currently undergoing treatment and doing well (i think). Hopeing my treatment finishes april/may next year as i initally got told october 2014, will find out in next clinic app.

Ah the dreaded lumber puncture i have mine coming up in july :(. Lost count how many it has been now. 

 

So have you not exprienced any heart or lung problems since as i hear this can be very commen after the amount of chemo given. Im just conncered for the future... 

 

Also abit of a random question but have you or to your kniwledge know if anyones had personal messages from orher users which have turned out to be someone trying to scam you? Disgusting I know if true, as if we dont have enough to deal with and if they are after my account details they are wasteing their time. I got diagnosed with cancer not won the lottery lol.

 

Thankyou again for your time. Hope to speak soon

Take care :)

Emilie

DevonLea
Posts: 22
Joined: Aug 2012

Hi there! I was 28 when diagnosed in nov of 2011, right before you. I have been looking for someone to connect with for years that knows what I have been through. If ever you want to chat, let me know, I will send you my personal email =) I am in maintence as well, been in treatment for a year and a half. I am so ready to be done. I too have a son who is 4 and half. Your story is very similar to mine =)

Emilie23
Posts: 5
Joined: May 2013

Hi there yes very similar ! Tell me about and me i cant wait! Yes im happy to talk about it :) x

DevonLea
Posts: 22
Joined: Aug 2012

My name is Devon and my email is devontraw@ymail.com. Go ahead and send me a message! Smile

RogerB40uk
Posts: 5
Joined: Aug 2013

Hi DevonLea

just a friendly warning that you might want to edit-out your email address and send it in a Private Mail .... could save you a lot of unwanted spam!

 Be well

Roger

DevonLea
Posts: 22
Joined: Aug 2012

Thanks Roger! I do not, however,  know how to delete it now that it is there. Do you?

Pleiston
Posts: 12
Joined: Aug 2012

Hi! I was diagnosed with ALL in June 2011 when I was 22. I finished my two-year chemotherapy protocol a month ago and I would love to talk to you about being a young person (although not a kid) with this kind of disease if you'd like. My email is allenhanxiao@gmail.com. 

DevonLea
Posts: 22
Joined: Aug 2012

Hi there! I was wondering what your story was. Is it ok if I email you? I am looking for anyone who has been through what I am going through to talk to. I know no one. I was 28 at diagnosis and am still in maintenance.

Pleiston
Posts: 12
Joined: Aug 2012

Please email me! I'm actually thinking of blogging about this experience. I feel like my circumstances were so unique that it's worth sharing. I set up an email account for it. It's stumbling.on.perspective@gmail.com. Email me there! My name is Allen by the way :)

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