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Leukemia

Leukemia

Posted by Blazin on Jun 2, 2014 3:15 am

Wondering if there is anyone on this site who has or had Chronic Lymphocytic Leukemia with the 17p/p53 deletion gene.

Re: Leukemia

Posted by Blazin on Jun 2, 2014 3:18 am

It is rare and have not been able to find anyone on any other communities I'm in. Hard to get info on treatmeants if I'm the only one.

Re: Leukemia

Posted by sllywbbt on Nov 11, 2014 9:23 pm

Hi there,
I was diagnosed in September of this year (5 days after my 43rd birthday) with CML (chronic myeloid leukemia) with positive Philidelphia chromoson. I am currently taking 400mg Imatinib (I think the brand name of it is Gleevac) daily.
When I was first diagnosed my white blood cell count was 185 and( normal is 4-10) and my spleen was approx 5-6 times normal size. My WBC count is currently 28 and my spleen is shrinking so the medication seems to be helping me.
I would be interested in hearing your story and how your treatment has gone so far.
Take care,
Ami

Re: Leukemia

Posted by Lara456 on Mar 25, 2015 7:43 am

Hi:  I just joned last week.  I have a diagnosis of Myelopprolific Neoplasm (unlcassifed for now). My white cell count is 40 , Jak2 neg, prescribed oral chemotherapy.  Quite a roller coaster emotionally coming to terms with all this.  Little info. How have you been doing?



 

Re: Leukemia

Posted by buddy333 on May 14, 2015 2:23 pm

Hi I was diagnosed with lymphocytic leukaemia on May 10th 2013, then they discovered the Del 17p gene on Nov 25th, 2013. The doctors started to set up for a stem cell transplant and I had to start 5 rounds of chemo. I had a Stem Cell transplant on the 5th of June 2014 and have been doing fairly well since, it has been a lot of Dr appt said many tests . The reason they tested me for Del 17p was my white count jumped from 45 to 448 in 5 months. It's a scary time but you have to try to remain positive. Hope everyone is coping with their illnesses as best as possible.

Re: Leukemia

Posted by Amieandkai on Jun 23, 2016 12:03 pm

I am 30 and have a 1 year old and was diagnosed in March with aml subtype m6. I am now going to Ottawa for a stem elk transplant. I was positive I wouldn't make it but now I am becoming more hopeful. Hoping transplant goes wrll

Re: Leukemia

Posted by Sunshine1 on Aug 19, 2016 12:41 pm

I have Accute Myeloid Leukemia. I have been through two rounds of chemo and am awaiting some word on the Stem Cell Transplant. I have no info on that or what to expect.
If anyone has any experience with this I would love to hear about it.

Re: Leukemia

Posted by Just4today on Aug 20, 2016 1:03 pm

All I can say is hang in there. My daughter was diagnosed 6 years ago. Had 3 rounds before her transplant. She is 6 years cancer free. 
Important,find a happy place,listen to music. You need to be positive that you will beat this.
bless your heart. Never give up on this monster.
this to shall pass :) :( 
Sharingheals

Re: Leukemia

Posted by Lacey_adminCCS on Aug 21, 2016 11:23 am

Hi Sunshine1,

I came accross this link that I thought you might find helpful. Everyone is different but if it were me I would want as much info as possible! I hope this helps. Wishing you well...


Preparing for Stem Cell transplant.


-Lacey :)

Re: Leukemia

Posted by Sunshine1 on Aug 23, 2016 10:04 am

Hi Lacey thanks for your reply. Unfortunately the link appears to have been removed.
I am definately one of the ones that wants all the info I can get. To this point I don't feel like I have gotten much from my doctor so I will keep digging!

Re: Leukemia

Posted by Sunshine1 on Oct 6, 2016 1:33 pm

Well I met with the transplant doctor on Tuesday. The odds he gave me were not promising. I do believe however that I am strong and healthy otherwise so I will survive this too. It will be hard but I have to move in the next two weeks. I have found a place to stay to recover. I will have to be away from home for up to a year. There is so much to take care of...... I need to sell my house and a will done just in case as well! I need a clone..... Lol I do have people helping.... I am not trying to do it all myself. If everything goes well I will have the transplant on the 26th of this month. I will miss my home so much.....

Re: Leukemia

Posted by Lacey_adminCCS on Oct 6, 2016 2:52 pm

Hi Sunshine1,

I'm sorry I just saw your post now about the link not working. Please try this if your still looking for information on preparing for a stem cell transplant.

Despite receiving difficult news and having so much going on with the move it's nice to hear your postive attitude and that you acknoweldge how strong you are!

It's good to hear that you found a place to recover and that you have people helping you. That support is so important.

Are you staying with a support person? Will you be closer to your treatment centre?

Take Care,
Lacey

Re: Leukemia

Posted by MarlaY on Oct 7, 2016 11:56 am

Hi there. I recently had a bone marrow transplant for Aplastic Anemia. I know it is different than Leukemia but the treatment I'd quite similar. Everyone else on the ward I was treated in had some form of Leukemia. I would love to answer any questions you may have about what this all entailed. I too had to live away from home. Thinking of you, Marla

Re: Leukemia

Posted by BlankPage on Nov 27, 2016 9:44 am

My husband had AML and underwent a bone marrow transplant in March of this year.  His 6 month biopsy showed no signs of cancer (thank God). But he is still quite weak and thin.  I am concerned that this is not 'normal'.  He seems even more weak now then he was a few months ago.  He has not been feeling well for the past 2 weeks.
Trusting in Jesus

Re: Leukemia

Posted by Megz on Feb 23, 2018 12:43 am

Hi Ami :) My name is Megan. I am in BC, I am 44, and I was just DX with Chronic Myeloid Leukemia. Just this month. On day 2 of meds: Imantinib and Hulydroxyurea (for my high platelets). Nice to meet you! Even if it was in a crumby kinda way

Re: Leukemia

Posted by Elsie13 on Feb 23, 2018 5:30 pm

Hi Megz‍ . Sorry to hear about your diagnosis.  Maybe you can connect with Hsmer1(AML)‍ .  There seem to be 2 different Leukemia discussions, but this link takes you to the newer one:

https://cancerconnection.ca/discussions/viewtopic/77/58161
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Leukemia

Posted by Kims1961 on Mar 3, 2018 3:19 pm

Megz‍ Hello!  Welcome to this awesome group.  I was diagnosed with breast cancer last August and am in the middle of chemotherapy currently.  You're right about meeting in a "crumby" way but it's so nice to know you aren't alone.  I"ve found this group awesome to ask questions, vent or share.

Hope treatment is going well!  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom