Help and Advice

HI GB20220ea4eb and welcome to this corner of the Community although I am sorry to hear about your Dad’s diagnosis. I am Mike and I help out around our various Blood Cancer groups.

I don’t have Acute Lymphoblastic Leukaemia (ALL) but I was diagnosed way back in 1999 at 43 with 2 rare types of T-Cell Non Hodgkin’s Lymphomas the first in 1999 and second in late 2013 the second taking me Stage 4a so although my blood cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

I have been a Christian for over 55 years and I can appreciate your fear and indeed your anger…… but we need to look at the reasons why conditions like your dad’s ALL and indeed my two types of T-Cell NHL have come about.

I have a number of very good Church friends who are medical Professionals…… one is actually my Respiratory Consultant (I also have Asbestosis) and we will often all sit and discuss the origins of cancer….. the simple answer is that through the centuries, generations of people have eroded our bodies God given immune system……and this has been passed through to future generations. Through bad food choices, environmental factors, harmful substances (Asbestos!!!) and over time these have opened the door for the many cancers and other illnesses we now hear about….. It is certainly not God’s fault.

A study was done at an Amish community in the USA a few years ago and it found that compared to the other American communities around them they had significantly less illnesses including cancers due to the communities life style.

It is now agreed that 1 in 2 of all people born in the UK will have to deal with some type of cancer in their life time….. but even in my 25 years cancer journey the developments in treatments has made cancer more treatable than ever. Some of the treatments are remarkable…… my medical friends would say miraculous.

If you look at my story you will read about the miraculous treatments I had…….. but I am coming up to 10 years out from my last treatment, I turn 70 this year and I doing great.

As I said 1 in 2 people in the UK will be effected with cancer is some way in their life time…… I am the only one in my family who has cancer…… I am more than happy to carry that burden in the hope that my wife, 2 daughters and son in laws and my 4 beautiful granddaughters don’t find themselves on the cancer journey - a cancer diagnosis is what it is and we all have to deal with it face on.

Over my 25 years I have had about 130 nights in hospital and have sat and talked with many people who had Leukaemia like your dad’s ALL who were going through treatment.

A good number were in their 70’s and 80’s. Most dealt with their treatment well and for years post treatment I have bumped into them at clinic or in town and they were getting in with life.

Always around to chat ((hugs)) 

Hi Mike. Im not sure how this works but the Drs have said that it hasnt spread (not sure how that works with Blood Cancer) and his White Cell Count is now 10 (Was 290 last Saturday).

Hi again….. the thing about blood cancers like Leukaemia and indeed Lymphoma and others like Myeloma and MDS…….. is that the presentation can be localised or widespread…… but where ever it is presenting it’s one and the same thing.

If you have looked at my story you will see that my first type of (Incurable) T-Cell NHL is an 8 in a million rare skin Lymphoma…… at one point my skin was 70% covered in skin tumours….. but this was all the same thing in different places on my skin!!!!

The crazy thing is in all my 25 years I have never had a blood test that specifically highlighted my Lymphoma…… so why call it a blood cancer when it does not show up in the blood!!!!!…… but biopsies of lymph-nodes and Bone Marrow can confirm the cancer…… but the diagnostic system can be different across the various types of blood cancer….. in Lymphoma there are over 60 different types and subtypes!!!!!…… with the cancer cells travelling through the body in the Lymphatic system and the bone marrow….. very complicated.

Blood Cancers are basically a liquid cancer and can stop in one place and collect a few other cells and have a party …… or move around the body and have a few parties….. but chemo is used to melt these gatherings away.

But this is when we have to trust in the Medical Professionals as they understand why your dad’s White Cell Count is now 10 when it was 290 last Saturday.

Does your dad have someone going with him to appointments?…… this is ever so important in the early days as the patient tends to miss a high percentage of what is said.

Has he been given an indication of a treatment plan?

Hi Mike,

I did read your story and Im thankful your here to tell it. He starts a harsher regieme of Chemo next week for 5 weeks to see how it goes. He then has to do another 5 Weeks. He is currently in Hospital. When he went in last Saturday the outlook was very bleak. The Drs said that with this type of chemo they usually do transplants as it occurs more in Children. They said that a man of his age (74) wouldnt be put through Harsher Chemo if his Dr didnt think that he could handle it. The other thing I would say so far is his obs are all very good (Temperature, Blood Sugar, Blood Pressure). They have done tests on his Heart and lungs. He has a really strong heart and the lungs of a teenager. Never snoked, done drugs and averages one Drink a decade. Please pray for us Mike. Im also a Christian. I'm 39 and this is the first time I have questioned the lord. I'm hopeful he heard me and has given my Dad the best platform to start Chemo next week.

I will certainly uphold your dad and indeed you and your family…… and can I suggest that you get your Christian friends involved as well.

There is a significant statement in your reply above….

GB20220ea4eb said:

They said that a man of his age (74) wouldnt be put through Harsher Chemo if his Dr didnt think that he could handle it.

…… that needs to be taken as a great encouragement.

When I was having my 2 Allograft Stem Cell Transplants (June 2014 then Oct 2015) I found myself sitting with others in the isolation unit going through their SCTs and one was in his mid 70s the other being late 70s and I am still in contact with one of them even now……. and he is living a great life.

We do have an area on the community where we have some Christians who post from time to time and will support - do have a look…..

   Religion, spirituality and Prayer forum

For good information do check out Leukaemia Care UK. Leukaemia Care UK is the man Leukaemia charity in the UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and support all the family.

Always around to help more or just to chat ((hugs))

Hi Again Mike,

My friendship group is mainly athiest or indifferent which is fine on both counts. From what we have been told by Drs is that the Leukarmia is not attached to any organ hence the spread has not happend. Im off to Chruch in the Morning

Hi Mike,

Today is the Day it all starts. He is having a Lumbar Puncture Today to remove or prevent anything in his spine. For the love of God please pray

I'm so confused. My Dad is now having oral and physical (lumbar puncture) and it feels like nothing is happend. He is eating like normal, drinking like normal, watching the telly like normal. I spoke to the Dr Today and he said you don't see any results of Chemo until a few weeks in. I thought he would be tired, lathargic and not with it. I'm so confused.

Hi, I think there is a perception that people expect someone who is on chemo to be significantly ill…… but as you see this is not necessarily the case - I was exactly the same as your dad during my main chemo……. I had no significant side effects.

Im confused. Does that mean its working or not? Im concerned when they said it was a particular tough regiment of Chemo for him.