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Hi there – my name is Katy. I am 43 and I was diagnosed through some routine tests on 28th August this year. We’re still getting our heads around it. I am on my fourth cycle (week 1) of VT`d and heading towards my first stem cell. I am married to an awesome man – luckily – and have two children aged 8 and 5. My daughter has high functioning autism diagnosed in May this year (it’s been a cracker!). My backgroundd is in law do my medical knowledge is limited st best. I’ve found th e VTD over time has completely wiped me out although I am fortunate in that I have not struggled with nausea particularly. I’d love to hear from people with hints and tips on how to prepare for the stem cell (slightly terrified), the worst and the best (if there are any) bits, what I should prepare for and think about, and also other parents with tips on how they managed with their children and any good resources they have used. I’d also love to know what it looks like on the other side. Even though it’s so new, I can’t imagine feeling even vaguely normal again. Experiences people have had going back to work (currently I am so wiped oitbI am signed off but doing some project work at home) and what life looks like when you live with myeloma. I am writing a blog for my friends and family too so if anyone knows of other good blogs, let me know. Thank you and hello!
Hello Katy, I cant help with treatment side of things as im only smouldering myeloma at the moment might change next month as next tests due, but i have found that this site now has fewer people accessing it I think more people are using the myeloma facebook group page which is a closed group so you can ask away any questions day or night, they are a fabulous bunch so you might want to check it out. cheers helen
Hi Katy
A warm welcome to you, I have had myeloma since 2009….two stem cell transplant (2009 and 2015) first I would like to say….it’s a rough ride at times BUT it’s a doable that’s for sure as I have had two….the build up to the SCT ? Take it nice and easy try and keep yourself fit (ish) as for the transplant …..”……it’s going to be rough at times but if you tell the nurses and consultants how you feel they will do their best to make it better, what advice would I give ? Well first do as your told by the consultants and nurses, take in with you your sense of humour (you will need it lol)
Use the mouthwash like it’s going out of fashion, you will crack it no problem, good luck
Onwards and upwards
Tom x
Hi Katy, I’m Adrian and am 4 weeks post sct no.2. As Helen and my wife tell me, most of the activities seem to be on Facebook now (uk myeloma support group) but I will try to give you a bit of information from my own experiences. I don’t want to scare you, but feel I should be frank, as I will describe, it is hard, but worth it.
I had my first sct in 2013 when I was 44, my personal situation is a bit different to yours in that we do not have children at home and my wife is not working so she can spend time looking after me. However, we do have 7 and 9 year old granddaughters that have been full of questions. I can recommend the info books from myeloma uk for giving good technical info, they also do some simple fact sheets which are great for explaining things to youngsters (and adults too!)
Firstly for you, the sct process will soak up a lot of time over the coming weeks, the mobilisation therapy takes a full day in hospital for chemo, followed by about a week having daily injections but these are done at home. After this is the actual collection which again is a full day in hospital. First time around I suffered no side effects at all from mobilisation and collection, second time I got a little nausea, some bone pain like a deep seated ache and a bit of hair thinning but otherwise ok. There is usually a pause of about 2 weeks between collection and transplant, but during this time are various tests for things like lung, liver and kidney function, plus a heart assessment, together these take about 3 full days.
The transplant itself is quite hard, I would plan on being in hospital for at least 3 weeks. It starts with inserting a central line which will be sore for a couple of days, the high dose chemo is actually not bad on the day, it is followed by lots of fluids so if it is done in a day unit make sure you can sit close to the loo! The chemo was supported by drugs for anti sickness and to help protect kidneys, take them even if you don’t feel sick, it is better if you can prevent it happening in the first place. You’ll get your cells back the next day, the preservative makes you smell of tinned sweet corn for several days, although you won’t notice it after a couple of hours. Over the next few days, your blood counts will fall and you will become neutropenic, this is when you will start feeling ill; diahorea, sickness, probably a temperature and very washed out and sleepy, I spent most of days 4-9 asleep both times, you will also lose most of your hair over the next week or so. As soon as the cells start working and your neutrophils start rising, you will feel a bit better and the diahorrea and temperature will subside, but don’t expect a rapid recovery. I went home on day 19 first time, day 14 second time, but both times I suffered terribly with nausea for several weeks afterward, it takes a while for blood counts to get anywhere near normal so you will tire very quickly and be VERY susceptible to infections. I also found that mental acuity and concentration span were severely reduced for several weeks too. I went back to work part time in week 10 first time around, I was ok, but then caught norovirus and ended up back in hospital for a week because my body could not fight it, after that, I got back to completely normal by the end of month 5.
After transplant 1, I had nearly 5 years where I was in complete remission and did not have to undertake any treatment or take a single pill on account of myeloma. In this time I enjoyed life and family, and achieved several life ambitions including some exotic travel and getting a pilots licence. Myeloma is always in the back of your mind as we know it will come back at some time, but the value of the remission time easily outweighs the difficulty of the sct process in my opinion. This time around, I am hoping to do a little work before Christmas and am currently thinking about some personal goals for 2019 and beyond.
For others, it is a bit more difficult to know what to say as everyone’s situation is different. You will need a fair bit of support when you get home from hospital, your partner and children need to understand and be prepared for this, it will be a few weeks before you will be the domestic whirlwind you were before all this started. For my family, friends and colleagues I find their reaction to knowing I am having aggressive treatment for cancer uncomfortable, so I give a cut down version of what is going on and put on a “I’m great “ mask whenever I see them, my wife is really the only one who sees the truth. I have found the publications from myeloma uk useful to educate my employer and the simple guides excellent for explaining things to the grandchildren.
It’s taken a couple of hours to write this and I need a nap now so I’ll sign off. I hope it is helpful. I can say I have met a lady in the local support group recently whose situation is almost identical to yours, my wife tells me she is very active on the Facebook group with regular updates as she has been going through the process, if you use Facebook, it will be well worth a look.
I wish you all the best for your treatment, if you have any questions, please reply and I will do my best to answer them.
Take care,
Adrian.
Hi Katy
My wife was diagnosed in 2008 ( she was 53 )and went through an SCT in 2009. I wrote a blog at the time as a way of keeping her friends and family informed about her progress. If you’re interested Google “Jules in England” and it should take you there. It’s not very scientific but you might find it reassuring, as her experience was nowhere near as bad as we had expected. I stopped writing the blog once our lives had returned to a new normality.
Good luck and best wishes
Stuart
Hi Katy
I was 43 when I was diagnosed with MM in 2014. It was a massive shock as I my only symptoms were mouth ulcers. I was feeling tired but having a 4 year old daughter and working part time, I put it down to the demands of everyday life. Let me try to reassure you that you do get your life back. I never thought it was possible but MM for me now is something that sits in the back of my mind not the forefront which it used to. I’ve only just returned to this site as I became slightly obsessed with it whilst going through treatment, wanting answers that simply couldn’t be answered. I hope you’re doing good. Best of luck to you x
Hi julierennie, I am new to the forum.
Its so good to hear that you are still doing well 5 years on. It’s important for newly diagnosed patients to hear stories like yours as the early days are a bleak time. I understand however the need to push it into the background of your life as the point of the treatment is so that you can lead a normal life. I think that when the physical symptoms of myeloma recede the psychological element lingers to some degree. I agree that as myeloma is so individual that getting definitive answers is difficult. I am no longer looking for answers but want to offer support to fellow travellers with nuggets of positivity as no matter what the individual circumstances there is joy to be had in life.
And your story is an important contribution to the newly diagnosed.
Best wishes
Cassidy
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