It's nice to know there is someone of a similar age to my Dad with MM, Bridget (although, it certainly isn't nice, if you get me). My Dad goes in on Monday to make the decision whether he wants to have the Myeloma XI treatment or the regular way.
I have to ask the group: What would you choose to do if you were given two options of treatment? Would you take the Trial or the standard non-intensive treatment? My Dad and my Mum are both overwhelmed by the information and luckily, I have my own medical history of Cyclophophomide treatment, so I know partly what Dad's going to be having, but the other drugs, I am just going by the side-effects (which I know are all different in each person). I guess my dilemma is what to say to help Dad decide? I took the handouts the nurse gave us the other day and read them all thoroughly, and highlighted the more prominent points for Dad to understand easier. There was a diagram in the handout that made things easier. If it was me choosing, and I was 72, I would want the standard treatment because at least it has been proven successful and there are more people who have had it. The Trial is still being done, and will be for another few years. Yes, it's only one drug changed, but looking at the side effects and comparing them, I would prefer to have the original standard treatment. But it's my Dad's choice, and I want him to have the best treatment for him. It's so hard.
Last night I started getting upset again, thinking of awful things. I shouldn't think about the bad stuff, but all that went through my mind were thoughts of how my Mum will cope if Dad wasn't around anymore (she can't drive and lives in the middle of nowhere in a small village). I thought about how sick my Dad could get on the drugs, and that he will lose his hair. I am scared for him and for the next 6 months. I even started thinking of being at the grave side and wondering what that will be like. It's horrible and I feel so guilty for having to be away in London this summer with my job and leaving my eldest brother and sister-in-law to cope with it all.
Anyway – I am venting. But it is hard and I know there are people here that understand.
Thanks for listening.
Marian
Thank you everyone for your kind words.
I thought I would update you on the situation. We, as a family, just went to see the doctor for the results of my dad's bone marrow biopsy. The doctor confirmed Myeloma. He also gave a prognosis of 5 years, which broke the room down into tears. However, I know that it is a just a statistic and from all your lovely support, I was able to stop crying and see things a little more clear. Of course it was upsetting seeing everyone crying, but now the worst is over and the diagnosis is given, we have many options. What's good is that the nurse we have been given is lovely and she will counsel and look after my dad. She also gave us print outs from this website and said they follow this site so I look to already be on the right page! 🙂
I know he will be given treatment for Symptomatic Myeloma – he has kidney damage. However, his bone scan came back without any damage to his bones! So that is amazing! He will get non-agressive treatment in pill form and we got a hunk of material to read and decide what route to go down before dad's next appointment next Monday.
It seems overwhelming. Luckily, the drug they will probably give him (Cyclophosphomide) is a drug I have had before (I have Systemic Lupus). I understood a lot of the things for kidney treatment so I am hoping that's a good sign and I can explain to my dad some stuff in more human terms.
Let me know if there is any good advice you can give me to give to my family. They are all taking a blow right now.
Marian.
Thank you everyone so far.
This is all great stuff. I am actually going to read some of these to my parents so they get an understanding of what is going to happen, but also to calm them.
Elizellan – it's funny you should say to take a digital recorder because when my parents said they didn't understand the doctor, I instantly suggested it. I remember a lot of students using recorders in lectures at university and I never had one, but I will look into getting one, particularly since the appointment is a few weeks away and gives me chance to get one from a cheaper website like what you sent me.
Minimouse – I agree that a person can terrify themselves. I already did that. I went to some sites that were so negative and even Wikipedia says life expectancy can be only a year in some circumstance (although I am sure perhaps a few people may have that happen) but it just all sounds so terrible.
There is a lot of positive energy on this site and your replies are already helping me to feel like there is hope. It is good to know that there are people out there that can give great advice and have gone through this. It is only the beginning of this journey and I am sure myself and my family will need a lot more help along the way, so I am glad you guys are here to speak to.
Marian.x
Hi Tom,
Thank you for your kind words. At the moment, the doctors have just taken the initial blood tests and he had bone scans yesterday. He has to go back in three weeks (far too long a wait in my mind, but that's the NHS for ya). I wasn't there when the doctor was talking to my parents, but apparently he was a younger doctor who had a very strong African accent, which neither of my parents could understand, not to mention he was talking quite fast and saying all these technical terms to them, etc. So, mum wrote down the Myeloma bone marrow and that was as much as she got. She did ask some questions but the doctor wasn't very easy to understand. So in three weeks time, myself, my brother and my sister-in-law will go with my parents to the appointment and make sure we get every bit of information we can, because I sometimes think some of these doctors don't realise how hard it is to understand some of their java, plus my parents are 69 and 72, so they already have problems understanding some regular words, let alone medical terms.
I will definitely be letting you know what they decide. I don't think the doctor would have said Myeloma if he wasn't sure, plus Dad's had two of the three major tests for it so far, and he will have a bone marrow biopsy at some point in the near future.
Who knows, maybe he doesn't really have it and that doctor was wrong, but the symptoms all lead to it. His kidneys have been affected and they say it's in his blood from his bone marrow, so that sounds pretty close to me.
Fingers crossed. I hope he is ok.
Marian
