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Any survivors of ALL as a young adult out there?

Pleiston
Posts: 12
Joined: Aug 2012

I'm a 23 year old who was diagnosed with ALL a year ago. I'm currently on maintenance chemotherapy and I'm looking for survivors' stories from people who were diagnosed as a young adult. I would also like to share my story with anyone in a similar situation and encourage each other throughout our journeys.

DevonLea
Posts: 22
Joined: Aug 2012

I was pleased to find your post. I am 29 and was diagnosed with ALL almost a year ago, about nine months now. I too am in the maintenance phase. I would like it if I had someone who knew what I was going through to talk to. Reply to this post if you would like to chat.

Pleiston
Posts: 12
Joined: Aug 2012

Hey, nice to hear from you. I read your other post about your counts and I definitely have felt the same way before. Right now mine are varying predictably with each 3-week cycle, where in the beginning the Dexamethasone makes them jump up and when I go off them the 6MP makes it go down to a bit below the normal range, as my doctor wanted them to. He told me to go back to school because he doesn't want me to always be in the mindset of being a full-time patient, and said that I need to be "a person first". I think that's true, the boredom can lead to paranoia and fear and depression. May I ask what drugs you are on?

DevonLea
Posts: 22
Joined: Aug 2012

I was on 6-MP, dexamethasone, IT and PO methotrexate, acyclovir, mag. and vincristine once a month. My doc stopped the chemo because my counts were dropping and so I have been off everything for almost three weeks. They started to come up on tuesday, but dropped slightly again today. He said he is not worried b/c my bone marrow biopsy was clear four weeks ago, however I am still so scared b/c it has been almost three weeks since I took anything. I got vincristine on monday but I don't think it lowers your counts. I too am a student and just started since my diagnosis. I am usually very positive but I am just so scared, I have come too far to start over... What is your story if you don't mind my asking?

DevonLea
Posts: 22
Joined: Aug 2012

I was on 6-MP, dexamethasone, IT and PO methotrexate, acyclovir, mag. and vincristine once a month. My doc stopped the chemo because my counts were dropping and so I have been off everything for almost three weeks. They started to come up on tuesday, but dropped slightly again today. He said he is not worried b/c my bone marrow biopsy was clear four weeks ago, however I am still so scared b/c it has been almost three weeks since I took anything. I got vincristine on monday but I don't think it lowers your counts. I too am a student and just started since my diagnosis. I am usually very positive but I am just so scared, I have come too far to start over... What is your story if you don't mind my asking?

Pleiston
Posts: 12
Joined: Aug 2012

I was diagnosed last June on routine blood work prior to starting dental school. In my induction and consolidation cycles, my counts always dropped more than expected and recovered very slowly. My doctor said that some people have different metabolisms and/or are just more sensitive to the chemotherapy. It's not necessarily a bad thing. In fact, if the sensitivity is also a property that your leukemia cells share, it's actually a good thing. I totally feel the same way as you, that I really want it to be worthwhile for me to be on drugs and putting my body through hell for two years. I don't want it to relapse and have to start over again. I'm currently on a 3-week cycle with 6MP, dexamethasone, vincristine, and methotrexate. It will continue until next July.

DevonLea
Posts: 22
Joined: Aug 2012

I know how you feel. I was diagnosed last November. I have to continue the same treatment as you, except I am on an 84 day cycles that switches from 6MP to dexamethasone, while getting vincristine and methotrexate once a month or so. That will continue till next November, 2013. I try to keep telling myself that it is just my body taking its time to heal, but when docs start talking about bone marrow biopsies I get nervous. I hate those things. How long has it taken your counts to bounce back after taking 6MP?

Pleiston
Posts: 12
Joined: Aug 2012

I'm on a 21 day cycle now. When my counts drop to around 1.5-2 neutrophils, I begin a new cycle starting with 5 days of dexamethasone so they jump back up again. That seems to be the pattern for me. I remember my 2nd cycle of chemotherapy, the one right after I went into remission, was the most brutal one. On average people's counts take about 4 weeks to recover, but I took 7. I had radiation at the same time though, so I literally felt so tired that I was afraid I'd fall asleep and never wake up. I had 2 cycles of intense chemo in the beginning, which I later found out was what they did for people doing a transplant, except I didn't get full body radiation. I felt like it was a miracle that I eventually recovered. I thought there was nothing left in me to begin rebuilding my counts. Hopefully the leukemia cells also suffered as much a beating. Were you diagnosed with symptoms or by accident?

DevonLea
Posts: 22
Joined: Aug 2012

Well, my husband and I had just gotten married in September and became pregnant. My son is disabled and so they wanted to keep a special eye on the new baby. My obgyn wanted me to go see a specialist and in order to do so, they needed routine blood work. My obgyn called me the next day to tell me that my counts were dangerously low and to go see this doc, but didn't tell me who he was or what he specialized in, only to bring my husband. I went to a place that said Front Range Cancer Specialits and started to panic. It is here that the doc told me that I had Leukemia and I would be sent down to a hospital in Denver for a month to undergo intensive chemotherapy. I was only ten weeks pregnant and they told me they couldn't save my baby. I know that the baby was the angel that saved me because all of my symptoms were pregnancy related. I went into remission easily and have been doing well so far, its just these little moments that terrify me the most. I met a girl your age with AML who was diagnosed the same time. She was in remission but needed a transplant. Her cancer came back and they couldn't get her the transplant in time so she passed away in April. Every time this happens to me, I relate to her and I know I shouldn't. I know its just my body taking time to recover but I am still so scared. And no one knows what I go through at all. Its very hard.

tinnieval@hotma...
Posts: 7
Joined: Jul 2012

I'm sorry to hear of your loss.i am 39my birthday was in may I was told my counts were very low and same thing drove up to bulidling a it said cancer center and I know all those chilling feelings and trying to hold it a together at the same time.i was told they would call me in 7 to 10 days went home then in two hours was told by phone to come straight to hospital cause I had this thing called apl it falls in the aml and if I Made it the first week with out dieting my chances would be very good. Stayed in hospital 33 days. Now here I am going to start the oral chemo. A little worried I feel good right now dealing with joint pain.

Maribthe1
Posts: 7
Joined: Sep 2012

Hi my name is mari. I was dx with ALL at the age of 28. It's been a scary roller coster especially me have 3 small Childrends. I'm happy to say that after 6 months of chemo & a bone marrow transplant I'm now cancer free.back on my own with my kids. Working part time and just taking it day by day. If you ever need someone to talk to u can email me or text or even call here's my info mjdiaz81@yahoo.com or my # 561 601 1970 feel free to contact me with any questions or if you just need some one to talk to. Take care and stay strong.

afschrieffer
Posts: 7
Joined: Sep 2012

i too have all. i was diagnosed about a year ago. i recently had a bone marrow transplant and would like to share stories

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