Hi,
My mother was diagnosed at 74 years old with primary plasma cell leukemia in March 2012. She was basically in kidney failure. However, they began her on an intensive course of Velcade, to which she responded extremely well. Initial prognosis was given at 9 - 12 months.
In approximately March this year, the Velcade was stopped; she had completed the full course that was available to her. Although not in complete remission, she was very, very close to it, and was able to enjoy a couple of months without treatment.
During the course of her treatment, her lifestyle was compromised significantly due to lack of energy and general 'unwellness'. Prior to her diagnosis, she was an extremely active person.
In June this year, she was experiencing extreme back pain, and tingling/numbness in her arms and fingers. This became debilitating, and then her blood results starting showing that the PCL was coming back quite aggressively, which was a huge emotional disappointment to the whole family.
There was talk in August this year of her beginning a course of treatment: lenalidomide (Revlimid). She was unfortunately not accepted for the trial testing, and then was told that to fund it personally (around $10,000 per month) was not possible, as it would take two weeks to be available, and she was not well enough to wait this long.
This was very telling for us, and we all began to prepare for mum's final stages. Early in September, mum developed pneumonia and was admitted to hospital urgently. Doctors were battling her pneumonia with antibiotics, which she had very adverse reactions to, along with starting a new chemotherapy treatment.
After persisting with the regimen for four days, mum quietly told us that she had 'had enough' and would like to come off all treatment and begin palliative care. Her decline was very rapid, and she passed away two weeks ago on 14th September.
In the end it was a relief for all concerned for her to pass, and she was at a stage where she didn't want to continue any longer. She had in fact made reference to this some months prior, as she could feel this second stage was very different to the first.
I wish you all the best with your journey, and the blessing that we hold on to is that we had time to talk, love, and share our feelings knowing that she didn't have a good prognosis.
Forums
Re: Questions about plasma cell leukemia
My niece was diagnosed at age 50, and she opted for chemotherapy, even though she was told the treatments were going to be very, very hard on her body, and her prognosis was dire. She passed away one and a half weeks later after only two treatments.
-
Lorid318
Re: Questions about plasma cell leukemia
I haven't been on here in awhile. I am still in remission from my auto SCT in May of 2010. I am still taking maintenance medication (15 mg of Revlimid) over 4 years now.
My labs are coming back normal.
My labs are coming back normal.
-
texas-tea13 - Name: Steve
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 09/19/2009
- Age at diagnosis: 59
13 posts
• Page 2 of 2 • 1, 2