We lost my sister to ovarian cancer a year ago. She went through chemo and was hospitalised more than once with Neutropenic sepsis.. Her journey through this disease was horrific.
A couple of months ago my 95 year old mum was diagnosed with CML. Her diagnosis was the side result of several blood samples taken for a different matter.
We saw a consultant two weeks ago. He suggested she starts taking Imatinib, said it could stop the leukemia progressing to the acute stage.
The consultant was very nice, said that this medication could have some side affects. Both mum and I asked various questions, received a wad of info to read at home & were asked to let him know whether or not mum would want to start taking the Imatinib within a month.
Upon reading the information we were given, I was surprised to find that both the side affects and ‘things to monitor during treatment’ were pretty much identical to the chemo my sister was on ( intravenous).
Nowhere in the info sheet does it mention the word chemo, nor did the consultant mention it.
Looking Imantinib up online is confusing.. Some sites describe it as oral chemo, others don’t.
I didn’t mention the word chemo to my mum.. We discussed the more frequent side affects - tiredness etc, which could actually make her feel worse than she does now.
Mum decided that at her age she really doesn’t want to be made to feel worse for whatever time she has left.
Yes she’s tired and her joints ache, but for a 95 year old who still insists on mowing her own lawn & does her own housework she’s amazing.
What would you do?
Hi Tina Tina1953 and welcome over to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our blood cancer groups.
I don’t have CML but was diagnosed way back in 1999 with a rare incurable but treatable type of NHL Stage 4a so I do understand this cancer journey rather well unfortunately.
Your mum sounds just like my now depaterd mum (Nov last year at 92) who until last summer was doing her own lawn, all her housework, cocking with no help coming in and this included a stair that I found hard to deal wit - a different generation.
Over my many years on my journey I have found some confusion in the language used by medical professionals. Where the words Chemo and Targeted Therapy were often used in the same breath to describe the some drugs that at times were not chemo.
It's like I had two Donor Stem Cell Transplants but a number of my consultants just used the old term of Bone Marrow Transplant but these process although achieve the same result are completely different.
My main 'chemo" was called R-EPOCH but this captained some drugs that were not chemo - it can be confusing.
The Macmillan information on Imatinib says it's a targeted cancer therapy. Like all drugs there can be side effects but we could line up 10 people on the same drug and get 10 different answers as to how it has went.
One of my treatment 'left overs' is a heart problem and I have have been put on some new medication and on reading the very big sheet of information there is a massive list of side effects but so far nothing. However one of the targeted therapies I was on back in 2011 - 2014 there was a 1 in 100,000 chance of hearing problems - I am now deaf in my right ear and have two hearing aids.
It is all a balance between the benefit and side effects resulting in quality of life.
You can put Imatinib into the search tool 
near the top and look at older posts and as always hit reply and see if the folks are still looking into the site.
Always around to chat ((hugs))
Hi again Tina, I am sitting nodding my head as you described the very unfortunate journey your sister was on and how you find it hard to understand the best way forward. On the whole most of my various clinical teams (hit my community name for my story) we’re great but some were rather obnoxious and not that forthcoming with information but we (my wife and I) developed a way of getting under their skin like a bad rash and keeping them on their toes.
As I said I had a number of targeted therapies and on the whole I did ok with them and more so then my chemos and Stem Cell Transplants but I was in my late 50s at the time.
I had a quick look at the info about Imantinib and the main thing that stood out in the side effects and indeed it was basically first on the list was ‘Risk of infection’
Coming into winter this is such a difficult challenge. I am 66 now but over the past 6 years since I had my full on treatments I have been 6 times back in hospital (32 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2, Neutropenic Sepsis x2, and numerous A Fib (heart) problems all the result of infections.
Late 2013 we had a role of the dice choice to make and we went for the plan I was given with no regrets, it worked and I am basically still around 5 or so years after I was told my number would be up.
These are hard decisions that have to be made and what every clinical teams say can only be general as in reality this is a total crystal ball thing ((hugs))
