mattkbo replied to the topic life after the transplant in the forum Under 50s 9 years, 8 months ago
Hi Pauline,
I was diagnosed at the same time as you, congratulations for starting back at work, I have yet to achieve that, you should be very proud. Yes it can be daunting can’t it, thinking that MM will return, you are not alone with this. As you say though, the key is to take one day at a time, try to live as healthily and as positively as…[Read more]
mattkbo replied to the topic life after the transplant in the forum Under 50s 9 years, 8 months ago
Hi Pauline,
I was diagnosed at the same time as you, congratulations for starting back at work, I have yet to achieve that, you should be very proud. Yes it can be daunting can’t it, thinking that MM will return, you are not alone with this. As you say though, the key is to take one day at a time, try to live as healthily and as positively as…[Read more]
mattkbo replied to the topic Stem cell transplant booked for Sunday 15 February 2015 in the forum Treatment 9 years, 8 months ago
Hi Andrea,
Good to hear you are home and on the road to recovery. It can be a long frustrating road at times, hard not to have any energy but it will return. Staying in is not a bad idea as there are lots of coughs and colds around at the moment. One day at a time, listen to your body and give yourself time to heal………and then, roll on…[Read more]
mattkbo replied to the topic The Under 50s Group in the forum Under 50s 9 years, 8 months ago
Hi Helen,
Thanks for letting me know you bought the book and are finding it useful. Sometimes when things are tough I re-read certain chapters. The book also got me meditating, I find it also helps.
Take care,
Matt
mattkbo replied to the topic The Under 50s Group in the forum Under 50s 9 years, 8 months ago
Hi Amanda,
I’m really surprised and disappointed that your hospital has lost results, no this has not happened to me. That must be frustrating and a worrying. I normally have to wait a few hours to get general blood results ie haemoglobin ect and then 4 days for Paraprotein results or Biopsies. Have you considered or are you able to change…[Read more]
mattkbo replied to the topic The Under 50s Group in the forum Under 50s 9 years, 8 months ago
Hi Amanda,
I’m really surprised and disappointed that your hospital has lost results, no this has not happened to me. That must be frustrating and a worrying. I normally have to wait a few hours to get general blood results ie haemoglobin ect and then 4 days for Paraprotein results or Biopsies. Have you considered or are you able to change…[Read more]
mattkbo replied to the topic Royal Marsden Myeloma Specialist in the forum Treatment 9 years, 8 months ago
Hi Phil,
Thanks for this, it’s really useful info. Thought I remembered the consultants going to US last year. I currently travel to Hammersmith following SCT but am considering a move closer, we live near Redhill.
Matt
mattkbo replied to the topic Progress and roadmap in the forum Newcomers 9 years, 8 months ago
Hi Mervyn,
My SCT worked out well thank you, gained full remission last April. Just trying to stay healthy everyday now.
Take care,
Matt
mattkbo replied to the topic The Under 50s Group in the forum Under 50s 9 years, 8 months ago
Hi Amanda,
Thanks for your good wishes, planning for a great remission.
The unknown is the hardest to handle and hardest to plan for too. I take each day at a time and everyday try and give myself the best chance of staying healthy for as long as possible. Just after my SCT I read a book called ‘Anti-Cancer’, there are lots of tips about how to…[Read more]
mattkbo replied to the topic Day 5 of treatment chemo and stem cell replacement done in the forum Treatment 9 years, 8 months ago
Hi,
Great to hear you so up beat and sounds like it’s going really well. Keep going, one day at a time and you’ll be out enjoying the sunshine soon. Yes it can be boring, when I had my SCT I wrote a list of all the things I wanted to do when I got out. I’m one year on and I’m still ticking things off, probably because the Wife keeps adding…[Read more]
mattkbo replied to the topic Chemo and more. in the forum Treatment 9 years, 8 months ago
Hi Val,
Also sorry you did not get a response first time. I agree with Dusk you need to understand what that statement means, you could phone the nurses for this site and maybe discuss what information you should be recieving or what questions you could ask so that you understand, the nurses have a great reputation. The most important thing is…[Read more]
mattkbo replied to the topic Royal Marsden Myeloma Specialist in the forum Treatment 9 years, 8 months ago
Hi Ian,
Many thanks for that, the search does work, there are many glowing reviews for Marsden Sutton, appreciated.
Hi all,
Can I ask anyone reading that is treated at Marsden Sutton, who there current consultant is please?
Regards
Matt
mattkbo replied to the topic Progress and roadmap in the forum Newcomers 9 years, 8 months ago
Hi Mervyn,
It sounds like your PP is responding well to your treatment. I was diagnosed at 42 with MM with PP at 49 which decreased after 6 x 3 wk cycles of CDT and then a SCT. Yes SCT are challenging but as Graeme said they are ‘doable’. I was in for just under 3 weeks. You’ll have a great medical team around you to get you through it.
It can…[Read more]
mattkbo replied to the topic my husband has been recently diagnosed with myeloma, and we are so confused in the forum Newcomers 9 years, 8 months ago
Hi Tracey,
Sorry to hear about you husband. Prior to diagnosis my Myeloma manifested itself as extreme pain in my back, hips and pelvis over a few weeks. Similar to Jan, I had four collapsed and another fractured vertebrae, the Myeloma had caused multiple lesions. Has your husband had MRIs or CTs?
I think it is important to discuss with your…[Read more]
mattkbo replied to the topic The Under 50s Group in the forum Under 50s 9 years, 8 months ago
Hi Amanda,
Thanks, you’re welcome. I started to loose my hair about 2 weeks after the Etopiside, which was my first high dose Chemo at the end of October. I noticed it coming out on a Friday and by the Monday it had gone. My hair started to grow back in about the third week of Jan.
I was nauseous from the Etopiside but no more really than the…[Read more]
mattkbo replied to the topic Royal Marsden Myeloma Specialist in the forum Treatment 9 years, 9 months ago
Hi Ian,
Many thanks for posting this, very helpful. Can I ask are you or is anyone else out there treated at Marsden Belmont?
Matt
mattkbo replied to the topic The Under 50s Group in the forum Under 50s 9 years, 9 months ago
Hi Nicky,
Really good to your SCT is going well, I presume you are still in hospital. Sorry to hear you are feeling sick, I did too, it did get easier as the days went on.
This may seem weird to post but once I recovered from neutopenia my wife made me banana and sultana flapjacks, I find they settle my stomache and give me a little energy. Just…[Read more]
mattkbo replied to the topic The Under 50s Group in the forum Under 50s 9 years, 9 months ago
Hi Charlie,
I completed 6 x 3 week cycles of CDT (chemo) at the end of Sept ’13, I started in mid May.
In mid October I went into hospital for 2 days, during those 2 days I had a Hickman Line fitted and then 2 x 5hr sessions of Etopiside (high dose chemo).
On the next day I started to have one daily injection (at home) for ten days for Stem…[Read more]
mattkbo replied to the topic Little things in the forum Carers 9 years, 9 months ago
Hi Clare,
We also have a Braun Ear Thermometer, invaluable.
Matt
mattkbo replied to the topic The Under 50s Group in the forum Under 50s 9 years, 9 months ago
Hi Nicky,
Just read this and looks like you are going through SCT now? Anyway wanted to say I hope all is going well, you will get through it. Just take it one day at a time.
Hi Charlie,
Good luck with your Chemotherapy and future SCT. I had 6 rounds of CDT and then SCT in 2013, you’re not alone.
Matt