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Acute promyelocytic leukemia

Acute promyelocytic leukemia

Posted by Birdwoman on Aug 16, 2020 11:03 am

Hi all here I am again but on a different topic. My daughter-in-law is at the Princess Margaret Hospital in Toronto with APL. It happened so suddenly. She and my son had rented a cabin on the river for a week's vacation. I went up to visit Wednesday for the afternoon and then Thursday, my son rushed her to the hospital, feeling very unwell. After stays at the local hospital she was finally sent to RVH in Barrie and then to PM in Toronto. She has been diagnosed with APL and is being treated with Tretinoin and arsenic trichloride. She has to stay in the hospital all of August and then daily treatments at PM for another month. She has found a place to stay in a lodge as we all live hundreds of km from the city. 
My son and her teenage son and all our families are so concerned. We have no experience with leukemia.
Please Lacey_adminCCS‍ and Lianne_adminCCS‍ can you help me find some info on APL? I have found lochatter but can't seem to find a way to read her posts. I search on her name and just get references to her. Any info would be so much appreciated. Thank you!

Re: Acute promyelocytic leukemia

Posted by Brighty on Aug 16, 2020 2:13 pm

Birdwoman‍  I'm so sorry to hear the news on your daughter  in law.    Princess Margaret is a fabulous  hospital  and she's in good hands.   I pray for you and your family  her treatments go well.   You may want to call the cancer info line to get more information on APL.   1888 939 3333.     Keep us informed  how your daughter in law is doing.   
Help is out there. All you have to do is reach out.

Re: Acute promyelocytic leukemia

Posted by Lianne_Moderato on Aug 17, 2020 1:09 pm

Hello Birdwoman‍ 
It is nice to hear from you though I am sorry to hear of your daughter-in-law's diagnosis. I am sure it was earth shattering to have this happen so suddenly.

Yes lochatter‍ was diagnosed with APL back in 2016. Perhaps she can jump in on this conversation and answer some questions you may have. Her profile is here: https://cancerconnection.ca/profile/7414 and if you scroll down you can read her blog/journal entries. Not sure why the actual blog link is not working but I will look into that.
DaleneH‍ also talks about being diagnosed with APL. I don't think she has been on for a while but may respond to this tag. In her profile is a link to her personal blog as well.

Brighty‍  has given you the number to our Cancer Information Helpline. 
Here is some info from cancer.ca as well https://www.cancer.ca/en/cancer-information/cancer-type/leukemia-acute-myelogenous-aml/treatment/acute-promyelocytic-leukemia/?region=on

I am glad she has found a spot at a lodge while she has treatment.



Re: Acute promyelocytic leukemia

Posted by lochatter on Aug 17, 2020 8:10 pm

Birdwoman‍ Thanks for reaching out. Your family is about to learn more about blood then you ever thought possible!
I always look on the possible side of things so let me share some APL positives. 
1. APL is the most treatable leukemia. Arsenic works wonders  on the immature white blood cells. 
2. There is not wait time for diagnosis and to start treatment. Boom, you have cancer and the good doctors and nurses are going to make you better starting now. 
3. I treated my hospital stay like a hotel. My room was cleaned daily, breakfast, lunch AND dinner in bed and the shower never ran out of hot water.  My family set me up with pillows (I would also recommend sleeping pills to get the quality rest needed for recovery and to tune out the beeping machines).
4. Masks are hip to wear. Use the hospital ones when leaving room. 

One day at a time. There will be bad days but there will also be great days. 

i also recommend a hand sanitizer with pump for next to the bed and a travel one for walking the hospital hallways. 

Let me know now if you have questions. Please take care of yourself and your family during this rollercoaster ride. 


Re: Acute promyelocytic leukemia

Posted by Birdwoman on Aug 18, 2020 11:52 am

Thank you so much Lianne_adminCCS‍ , lochatter‍ , Brighty‍ for your replies and support. Slowly we are starting to process this new reality. My daughter-in-law seems to be doing okay at Princess Margaret. She has her own room and often comments on the excellent care she is receiving. That is keeping our panic on hold. Also that APL has a good treatment success rate.  We are all so grateful that she is at PM and is responding to the treatment, although my son said she did have a blood clot and told me after the fact, also some fluid around? the lungs. They are not telling me everything so as not to worry me! 😉
That is okay because that is what I did to them! I never told them my full diagnosis of uterine serous carcinoma stage 3C in 2016. They were already so scared and worried that I just never told them until yesterday. My son said - you never told us - so I told him. They supported me through through all my surgery, chemo and radiation in 2016 and my miserable year of pain in 2017. Yes, lochatter, I was able to read your blog, and we both had a bad 2017. I wanted to read it to see how bad the side effects might be from the treatment. I saw that you said you were feeling pretty good four years on so that is reassuring. I love your saying ...
lochatter wrote

I’ve seen better days,

but I’ve also seen worse.

I don’t have everything I want, 

but I do have all I need.

I woke up with some aches and pains, 

but I woke up. 

My life may not be perfect 

but I am blessed.

That is how I feel these days, blessed because I woke up! You mentioned arthritis... I just had a CT scan last month that showed another spinal fracture in my back. I am wearing a brace again and trying to limit movement to let it heal. It has been weeks... I do wonder if the radiation weakened my vertebrae...I know my daughter-in-law will have many side effects from her treatment. Lochatter, honestly, she is a nurse and 43 years old. Do you think she will be able to go back to work? I know everyone is different, but my life was upended by cancer. And I am worried about her. I am 72 now (thanks Brighty! Aug 4) but she is young like you! I know so little about APL though I have read up on it. So anything you can share from your experience would be helpful. Thanks again and sending my best wishes to all the great people on this site and everyone going through treatment.   

Re: Acute promyelocytic leukemia

Posted by Lianne_Moderato on Aug 18, 2020 12:08 pm

lochatter‍  - Thank you so much for that excellent response to my tag. So much wisdom in one post!

Birdwoman‍  - happy to hear that you are all settling in to this new, but temporary, world and that your daughter in law is getting such excellent care. Continue to keep us updated as you are able. I also wish you continued healing.


Re: Acute promyelocytic leukemia

Posted by lochatter on Aug 26, 2020 12:41 am

Birdwoman‍ I'm glad you found the poem I shared.  During my recovery I went to a pottery class through Wellspring (support services for cancer patients, caregivers and survivours).  We were given clay and molded it into cups or bowls and then returned a week later to paint them.  It was very theraputic working with my hands to create something while sharing stories with other survivors. I had searched the internet using the word blessed for inspiration and found that poem.  It rang true for me and I have it printed out in different font and hidden behind cupboard doors throughout my house so when I open a door, I am reminded how blessed I truly am.  Sadly the poem was much too long for my clay cup so I instead drew my family members as stick people, a four leaf clover, a blood drop, an orange ribbon, a red circle with a letter A (for Tretinoin which is like a super dose of Vitamin A - or at least that's what I told myself) and lastly the elemental symbol from the periotic table that represents arsenic, which happens to be my favourite number, 33.  

I believe that anything is possible so I wouldn't doubt it if your daughter-in-law is able to return to work once she recovers.  I had fluid around my organs while I was in the hospital but it all went away in time.  The doctors are very good at watching a long list of symptoms that could potentially turn into a complication so they can be caught early on.  It took me two years to be able to look at some of the information on the internet about APL.  My one sister read a lot and she would tell me only what was relivant in that moment which I greatly appeciated. 

I hope you are taking care of yourself too as it's equally difficult being a loved one of a cancer patient.  

Re: Acute promyelocytic leukemia

Posted by Birdwoman on Aug 28, 2020 3:26 pm

Hi lochatter‍ thanks so much for your reply. Nice to hear about the pottery class, I find being creative with my crazy quilts really fills a need and challenges me in ways I can still enjoy. And the periodic table...wow. I studied chemistry at U. ages ago! Even though I am about twice your age we seem to have some common interests. So nice! Thanks for sharing. You are so inspiring!
Now back to C  ugh! My DIL (daughter in law I am new to social media!!) is doing pretty well. The treatment is working.  I read some of your letter to my son over the phone and he seemed to be reassured. I have told my DIL about this site and yesterday, after reading part of your blog, I sent her a few quotes and said I would not email her again until I heard back from her in case she is not ready or not willing to talk to me. I have not heard back yet. 
You wrote that you did not want to research APL for 2 years and one of your sisters gave you the necessary info. So I can understand that my DIL is still trying to process everything and has her own way of dealing with things. My son said she will be able to come home for two weeks at the beginning of September and then she will go back to Princess Margaret as an outpatient for her maintenance phase, if I understood correctly.
I am so glad you are doing well. Your blog is amazing, covering so many health topics. It will take me some time to read it all. Thank you again for your help and reassurance. My DIL has a good chance of recovery and is very positive. I am very grateful for that. Wishing you all the best and let's stay safe in these tricky times!