My second post for the Huffington Post's young adult cancer awareness project can be read at the following link: The Loaded Cancer Question: "Why Do We Get Sick?"
If you read the post, please share it and the Generation Why landing page with others. There are a lot of great (and unfortunately heart-wrenching) stories on the project's landing page.
If you read the post, please share it and the Generation Why landing page with others. There are a lot of great (and unfortunately heart-wrenching) stories on the project's landing page.
hi shelley! i'm so happy to have stumbled on your blog and hear personal accounts of other APLers (we are a rare breed). i just recently (on thanksgiving eve) took my last dosage of ATRA. i completed 21 months of maintenance therapy. I was diagnosed at age 26 with none of the risk factors listed either. I had a persisant sore throat which eventually led me to the ER at lenox hill where they told me it was HIV or Leukemia (The only time i prayed for leukemia!)
ReplyDeleteit's been such an amazing journey and a huge test of patience (ask anyone who has to hear my rant about how slow my hair grows!)
In reply to your story...people always want to know why anything happens to them. For me, i sometimes wonder WHY did i get to be so fortunate to have a cure. Even within the APL community, i had very little side effects to the treatment. Really none to even complain about in comparison. it's an interesting perspective and hopefully you'll write about that in the future! i look foward to hearing more positive insights with your progress. thanks for writing you rock!
Jane, thank you for your note, and congrats on completing maintenance! It must feel so great to have it behind you. I'm glad you're initial symptoms weren't too bad (I had a tough go of it in the hospital during induction...)
ReplyDeleteYes, in addition to thinking about "why" I got cancer, I also think about why I was fortunate to have had a gene mutation for which the medical community has found treatments with a high success rate. I once commented to my dad that I have terrible luck to have been diagnosed with such a rare disease, and he responded that he thinks I am incredibly lucky, given I'm now in remission.
It would be great to chat with you off-line. Please find me on Facebook!
Hi, I wish you every success with your APL treatment. Unfortunately, my wife died of an APL induced inter-cranial haemmorhage, aged 46 on November 6th. She had previously been treated for breast cancer in 2008/9, with a mastectomy, chemo and radiation treatment. Please be aware, and make other APL/Breast cancer sufferers aware of the chromosome which links these 2 conditions,chromosome 17. My advice for APL sufferers is to have regular mammagrams and my advice for breast cancer sufferers is to have regular blood tests. My wife was diagnosed with pancytopenia on October 18th but did not received treatment for her boood disorder until November 4th, when she was diagnosed with APL. She suffered her fatal haemmorhage 15 hours later. Paul Franks, UK
ReplyDeletePaul,
ReplyDeleteMy deepest, heartfelt sympathies to you. I am so, so sorry for your loss. Thank you for caring about others, when I'm sure it must be hard not to just crawl into a hole and stay there. I will bring this up with my doc at my next appt, and once I have a better understanding, write a post. A woman in my APL support group had breast cancer ten years ago, and believes the treatment gave her APL. I have not heard of the reverse but will look into it. Again, I am so, so sorry. You are in my prayers, and I wish I could give you a hug across the ocean.
Thanks for that and I sincerely wish you all the best. I'm a History teacher so research is a way of life for me! Once i get my teeth into a subject there's no stopping me. This is a summary about what i've learnt so far about the connection between APL and BC.
ReplyDeleteThe chemotherapy treatment my wife was given included Epirubicin which apparently may increase the risk of developing leukemia (cancer of the white blood cells and Cyclophosphamide which may also increase the risk that a patient will develop other cancers. Lesley was also treated with docetaxel. Lesley also underwent radiation treatment.
‘The occurrence of APL as a second tumor (sAPL) has been increasingly reported in recent years, most commonly developing in patients receiving chemotherapy and/or radiotherapy for breast cancer’ http://dspace.uniroma2.it/dspace/bitstream/2108/1428/1/Final+thesis+version3.pdf
The Chromosome common for both breast cancer and APL is ‘17’. Chromosome 17 is severely rearranged in breast cancer. It has been observed that the majority of BRCA1-associated breast cancers are triple-negative 9my wife's BC was this type) and express a high proportion of basal-like cytokeratins (CK5, 14, 17), as well as P-cadherin and HER1/EGFR.[20-24]
The BRCA1 tumor-suppressor gene, originally identified in 1994 by positional cloning on chromosome 17q21, is a multifocal protein in many normal cellular functions including DNA repair, transcriptional regulation, cell cycle checkpoint control, and ubiquitination.
In APL A reciprocal 15;17 chromosome translocation, t(15q+;17q-), was found in all cases, and the breakpoints estimated to be 15q22 and 17q12-21.
best wishes, paul tel number 00441484866394