Can someone explain this particular type of Leukaemia to me. My daughter has ALL with B cell gene abnormality. I have asked the doctors to explain, but still do not understand this type properly.

Hi Danielle,
Thanks for your reply, I will check out the website. 21 is a difficult age not only on it's own. I am haveing trouble getting her to read anything about her leukemia. I think she thinks that if she doesn't know about it it will make life easier. I wish sometimes you could put old heads on young shoulders. We will just take baby steps with this until she is ready to take bigger ones.

Cheers

JOJO

Jojo hi,

Here are three more _link_s that may help.

On the National Cancer Institute website (USA)
http://www.cancer.gov/cancertopics/wyntk/leukemia

On the National Marrow Donor Program website (USA)
http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Lrn_about_Disease/ALL/index.html

On the Leukemia & Lymphoma Society website
http://www.leukemia-lymphoma.org/all_page?item_id=7049

Cheers,
Ed.

Hi Jojo,
I was a 30yo male (am still male for the record) when diagnosed with ALL with B cell Genome abnormality. I was diagnosed in May of this year and am being treated with the Fralle 93 protocol for 15 to 25 year olds. It’s a long and tough treatment for any one regardless of age and condition etc. What protocol is your daughter undertaking?

The basic way I understand this disease without getting weighed down with too much medical jargon is that it causes the bone marrow to over-produce immature white cells which leads to crowding of the marrow and therefore interfered production of normal blood – like platelets etc.

One of the best publications I have found is _title_d “Understanding Acute Lymphoblastic Leukaemia in Adults, a guide for patients and families”, by the LF.

I hope this helps.

Tri Man

Hi Tri Man,
I am not sure what protocol she is on I will ask the doctors. We have just had great news that her younger brother is a 6 point match for her transplant. It is such a relief when a family member is a match. She did not take it to well as we are still coming to terms with fertility. We are meeting the transplant doctor next week and hopefully can get some answers regarding storing eggs.

Carly is about to start her 3rd cycle which has an A & B part to it, with 4 LP's per cycle, I would assume that you have the same treatment. Do you need a transplant?

Cheers

JoJo

That’s great news about the match Jojo. I wish you and Carly all the success with that and hope it goes as smoothly as possible. I’m pretty sure you can’t get better than a 6 point match, I’m really happy for you.

I have three brothers, none of whom were a match and I was recently told the international donor registry was exhausted looking for a match, which is unusual due to my Anglo background. So now they are looking at cord blood as another option. That outcome actually takes the decision making task out of my hands so if I did require a transplant or if it was suggested by my Dr I would have to decide if that was what I wanted. At this stage the only hope of cure for me is chemo.

Carly’s protocol does sound similar to mine. The third and fifth phase of treatment are called delayed intensification (for good reason as they are long and demanding) with 4 LP’s in the first of those but none in the last. I have a copy of my treatment so I can keep track and cross everything off as I go. It feels great to take a big think pen to the page. I only have 2 LP’s left and can’t wait till their over.

A lot of people tell me to hang in there. It annoys me because hanging in there is what someone does when they’re desperate. So I say ‘cancer patients don’t want to hear hang in there. We want to be told you’re doing great and you’re kicking this evil things ass’. So keep fighting hard and keep kicking it ass. Be positive and strength will follow.

Hi Jojo,

I was 19 in April 2006 when I was diagnosed with ALL. I was also on the fralle 93 protocol. I finished my last treatments in June. I am in complete remission and have been told by doctors I have little change of relapse.

Aside from a general understanding too much information about the disease specifics is not always helpful, to the sufferer or to their parents. I know my mother spent many a night looking up research on the internet and all it did was made her worry more.

For me I had no desire to look into the specifics of my disease. That said I had a basic understanding as I study human physiology at uni... I trusted my doctors and my treatment (Alfred Hospital). I felt that whether I knew what was going on or not didn't matter, it was going to happen anyway and I had no way of stopping it. All I could do was take my treatment and wait.

For me the most important thing was to remain positive, as your daughter is young she has a very high chance of surviving. She needs you to be there for her and love her as only a parent and mother can.

Sometimes (as parent or patient) it is important to step back from all the fears and worries. Take a deep breath. Let yourself feel whatever you need to feel about this condition; anger, confusion, frustration, injustice, sadness anything at all. Let it all out. Then you can focus your energies on positivity and the future.
There is no right way to deal with this, but I don't advise bottling up emotion!

Aside from physically having my treatment I didn't think about my situation excessively. I cried when I needed to, wrote stuff down to vent, and was generally frustrated but I tried to look to the future (which often seemed so far away). To imagine when all this was behind me. I didn't want to delve deeply into the murky depression of over-analysis. Perhaps I was scared. I busied myself, and after a year (halfway thru treatment, bald and with a hickmans catheter in my chest) I went back to uni part time. It is easier to be positive when you are distracted from what is worrying you.

The best advice I can give for your daughter is don't live the disease. Do whatever you can to make yourself happy during a time when you don't have much of a choice about your physical situation. Sometimes you need to be selfish in life and this is one of those times, stuff what anyone else thinks do what you need to.

At the same time, everyone reacts differently. I just know what worked for me. I feel that I have come through ALL positively and I am a happier and stronger person now. Now only because I don't let the small things bother me but I know in myself that I can get through anything. It can also be a good time to think about what is really important to you in your life. I definitely reassessed my priorities.

Love and hope,
Stacey