Leukemia AML Blood Cancer

Hi Ejaz this side from India, 1 month back my Mom started experiencing pain in her gum and then her face started swelling, also she was suffering in high fever all time.

We went to a dentist and the dentist given some medicine and mouth wash, after that things goes more worst as the pain increase and white coating found all over her gum and tongue become black.

All we frightened and told that dentist what’s wrong and the dentist remove her 1 teeth by seeing infection :neutral_face::neutral_face:. After waiting more 4 days we do the blood test and found her white blood cell count goes to 86000 :cold_sweat::cold_sweat:. We immediately went to hospital and there doctors didn’t took her admissions and send her at City Hospital.
She got admitted there and doctor started the treatment. In city hospital doctor understand the disease but didn’t tell us directly. She was admitted 11 days in the hospital and treatment given to her and she turning in better position then previous also her white blood cell count become 12000.

Big salute to doctor now the doctor told that they want to do some test which include bone marrow test, we surprised why bone marrow test then doctor told there is symptoms of cancer and that moment we all broken​:sob::sob:.

Bone marrow test done, which result lots of pain in back my mom can’t move and the pain continue almost 5 days.

As my moms stable doctor given discharge and told that once the report plz come and consult.

We have received the 1st report in which the diagnosis come ACUTE MONOCYTIC LUKEMIA then we went to consult to Doctor, Now the doctor refer to the Hematology department there we took appointments.

Doctor see the report and my mom condition too that day they conducted the blood test and found that my mom white blood cell count was 8500 but her RBC is 5.8 which was too low. Doctor prescribed below 4 medicine.

  1. Blood transfusion of 3 unit
  2. Voriconzol tablet
  3. Her Sugar tablet
  4. Mouth wash

And informed about the treatment i.e. Intensive and palitive treatment. Also they told thay my mom is not fit to take intensive treatment.
Also they inform about side effect and success rate of the treatment. The palliative treatment is look like life time treatments in which she will received 7 injection ( Azacytidne) 1st week of every month (5 injection 1st week and 2nd week 2 injection) and also she has to take Venetoclax tablet orally. Doctor told that do this all 4 things which mentioned above and come back after 1 week.

Those 1 week I started talking to many of my friends and family members who experienced cancer patients at their home and getting their patients treatment journey, response that most of them passed away during the treatment which frighten us so much. We experienced my mom now walk and go to toilet with herself also in this 1 week her recovery was good which give us hope.

After 1 week i went to meet the doctor without taking my mom just to understand more in details that they doctors and also i told about my friends and family patients status. That day doctor told clearly that only 30% or less chances of cure and most patients die in very early stage of chemo the death ratio in intensive chemo is compare to pelative. :sob::sob::sob:. That her more report also came chromosome report which say she has Acute myeloid leukaemia (AML) and ALL ( acute lymphoblastic Lukemia) which is very rare

We don’t know what to do now as she was doing well and we know she can’t fight with chemotherapy. We asked doctor what if we don’t take any treatment​:sleeping::sleeping:.

Doctor then told that yes that called Supportive care in which some antibiotics they give and regularly monitor her blood report and time to time blood transfusion will be done but this option didn’t recommended then we leave the hospital and came to home, as of now my mom was not knowing that she has cancer…

We decided to start the treatment not intensive one but pelative one and took appointments.

We went to hospital and informed to my mom that she required 7 days at hospital for her teeth treatment and then she heared her name for chemotherapy list. Then she said that she understand that she got cancer and she denied to take chemotherapy as she know her sister husband who just 42 yeara old took chemo and passed away also some other cases.

She said if she will take chemo she is going to die, then we didn’t take that day chemo and came back to home. We have tried to explain her this is for her treatment, we are not going to let you die.

Then she understand all process of treatment and she want to go with supportive Care treatment.

We don’t understand what to do now, if we forcing her to chemo then her self loosing hope of survival which is not good sign.

Currently she is taking her sugar tablets, voriconzol tablet and neutropenic diet.

1 Like

Oh @ejaz a great big welcome to our UK forum to you all in India.
Obviously in different countries treatments and treatment regimes are very different.
What I can say is how difficult it must be being a child with a sick Mom and perhaps you think she should take one course of action and she wants to take another.
What can you do?
From what you say your mom has the full facts and right to make her own decisions.
How horrible for you being so powerless.
Perhaps all you can do is support and care for her in whatever choice she makes.
The other most important thing is that you all really look after and be kind to yourselves.
Love and care is a priceless gift to give and receive.