[vivParticipant]

Hi, my Dad who is 73yrs old was diagnosed in February with MM, it is mainly affecting his pelvis and spine. He is being treated with CDT and has just finished his first cycle. After his hospital appointment last week they have doubled his thalidomide, and seemed generally pleased with his progress. The thing that really worries me is that apart from hospital appointments my Dad has not been out of the house since he started treatment due to feeling so lethargic.Is this normal ? I'm not sure if it's the MM or the treatment. It really upsets me to see my Dad like this as he has always been so active.My Mum doesn't drive so I am trying to help as much as I can but work full time and have just finished treatment for Bladder Cancer myself. I am so worried that his quality of life won't improve, he never complains but I know the lethargy is really getting to him. Do you think this is normal ? Sorry to ramble on.

[eveParticipant]

Hi Viv

Welcome,this is going to be a big learning curve in your life ,and many times you are going to wish you are not here.There is no cure for Myeloma but it is treatable,how long a person lives depends on how they view there world,there hopes and dreams.

You have had Cancer yourself so you know the problems,We live in this world of Cancer and we all deal with it so different,I often think the mental aspect is more important,ask you self what will give your dad the will to live,or will he choose another root which is more acceptable to him!!!!

At the end of the day its his choice ,If it was my husband I would be dragging him out,lunch,walks any thing,rather than looking at 4 walls,but we are all different,his life,his choice.eve

[vivParticipant]

Hi Eve

Thanks for your reply. It's not that my Dad doesn't want to go out he physically does not have the energy as he feels so unwell. My Dad is not a quitter and is a very positive person so that is why it worries me and upsets me so much to see him like this.He is trying to be cheerful but I know he is finding it very frustrating that he can't do anything. I just wanted to know if it is common for CDT treatment to make people feel like this ?
Thanks Viv

[eveParticipant]

Hi Viv

I was hoping you would get some reply,s from people in your dad,s position,so I am boosting this to see if some people can help you.

People do get very tired,but you have to make the most of the times you have some energy,and make plans to go out even if its a walk round the block,all doctors will tell your dad to excise ,they chemo takes a lot out of you,and does make you feel ill,make sure your dad tells the nurses how he feels as some symptoms can be controlled. hope this helps.Eve

[vivParticipant]

Hi Eve

Since my first post my Dad appears to be picking up a bit, I took him to get his haircut and he has been for a couple of walks this week which is the most he has done in the past 6 weeks , he is feeling more positive which is good to see and now Spring is here hopefully that will make all the difference and as you say we need to make the most of the days when he is feeling stronger.I know he has a long way to go with his treatment but fingers crossed we will continue to see an improvement.
Best wishes to you and thanks for taking the time to reply to me.
Viv

[DaiCroParticipant]

Hi Viv,

Recalling my CDT experience I was very similar to your Dad. All I can advise is to tell your Dad not to despair… its early days and the CDT is very actively fighting and killing off the cancer cells… but its also killing more than a good few ordinary but vital life cells… so its no surprise he is feeling absolutely drained of energy. Go with the flow, if the consultant is pleased with his progress, to the point of daring to increase the 'T', then it means that the treatment is working and following my similar experience he will soon start feeling much better. There are bound to be side-effects as long as he is on the treatment but as the cancer cells decrease his energy levels will increase and hopefully he will get by with 4 Cycles (rather than the full 6).:-)

I have Bence-Jones myeloma – I do not demonstrate paraproteins, I am measured by kappa light chains (paraproteins are heavy chains) but its the same difference in the end. I had a mantra 'Whatever It Takes', our friends David and Tom had/have 'Vasbyte – 'Bite Hard' and 'Onwards and Upwards' respectively. It helps to have a mantra… a reminder to dig in until life and health improves… and improve, I am sure, it will. 😎

Regards to you and your Dad.:-)

Dai.

ps. where are you from and where is your Dad being treated? (No obligation to reply).

[vivParticipant]

Hi Dai
Thankyou so much for taking the time to reply to my post, you don't know how much better I feel just reading this , to hear that it is quite normal for him to feel the way he has.
On another plus side my Dad has been taken off all his morphine, so something must be working as he was in a lot of pain before his treatment started.
We live near Milton Keynes and he is being treated at the local hospital which has a Macmillan unit.
Thanks again
Viv

[PerkymiteParticipant]

Back in my bad old days when I had just started down my treatment path I remember going out for a walk with my wife. It was a glourious day, the sun was shining flowers everywhere and the world seemed good. It really picked my up I can tell you, I felt so much better and the world did not seem such a dark place.

If he likes walking, and I do, encourage him to get out as soon as it is warm and just sit on a park bench for a rest now and again.

Kindest regards – vasbyte

David

[Anonymous]

hi viv
my musband was diagnosed in august last year. he has completed 6 cycles of
CDT and had a stem cell transplant at the churchill in oxford. he has been
home for nearly 3 weeks and is doing v well and thinking of going back
to work in 3 weeks time. it has been a real rollercoaster but we have always
each other and 4 wonderful children. we go to the mac unit at milton keynes
too. best wishes sarah

[Author]

Posts