[mattkboParticipant]

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 you can each day and avoid stress. I find meditation really helps with this.

There is an amazing bunch of people on this site, people that have been dealt a poor hand but keep moving forward. Hope you had a great holiday Anthony and your holiday to Aus is awesome, we all need something to look forward to, I think we deserve it.

‘You can believe the diagnosis but you do not have to believe the prognosis’

Take care all,

Matt

 

 

 

• This reply was modified 9 years, 8 months ago by  mattkbo.

[mattkboParticipant]

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 summer.

Take care,

Matt

 

[mattkboParticipant]

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

[mattkboParticipant]

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 hospitals? I think there was a week or two delay between ending CDT and Bone Marrow Biopsy.

Hope the book helps, take care.

Matt

• This reply was modified 9 years, 8 months ago by  mattkbo.

[mattkboParticipant]

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

[mattkboParticipant]

Hi Mervyn,

My SCT worked out well thank you, gained full remission last April. Just trying to stay healthy everyday now.

Take care,

Matt

[mattkboParticipant]

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 eat well and exercise etc but also how to handle a lot of the thoughts and emotions we probably all have. It was written by Dr David Servan-Schreiber ( published by Penguin Health) it really helped me after the SCT to deal with the void that can appear when the structure of chemotherapy and regular hospital visits is removed. I wish I had discovered it around diagnosis time, would have stopped a lot of sleepless nights.

Take care,

Matt

[mattkboParticipant]

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 dusting, hoovering and ironing to it.

Take care, proper food soon.

Matt

[mattkboParticipant]

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 that your husband gets the best care, at a facility that he and you feel comfortable in and that is easy to get to. (I currently have a 2 hr London traffic drive for my hospital). I don’t think your consultant’s feelings are important if you feel you can get better and more convenient care elsewhere. I’m sure you’ll be polite.

Good luck with it all.

Matt

[mattkboParticipant]

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

 

 

[mattkboParticipant]

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 take a while to recover from the transplant, but again to quote Graeme if you ‘listen to your body’  and take one day at a time, then you give yourself a better chance of getting back to doing the things you love.

My thoughts about the SCT were simply that I had got my PP down to 1 and believed that the transplant would give me the best chance to get the disease into a long remisision.

Matt

[mattkboParticipant]

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 consultant any new problems he has, however minor you may think they are, Myeloma is a very individual disease.

Matt

[mattkboParticipant]

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 CDT and it started to subside before the SCT. The Melphalan (SCT) also made me nauseous, quite a lot to begin with but it it did get better as the days went by but hung around in a mild form for a few weeks. I lost my appetite during the SCT due to nausea but when I became neutropenic in my second week I was put on a special irradiated diet which unfortunatly was not too appetising to me either so it compounded the situation. However you must eat as you need to build your strength up as much as possible.

I was given some advice prior to my SCT by my Wife’s friend who also had the transplant and I think it is invaluable. Clean your teeth after every intake of food, at least four times a day and use the mouthwash afterwards, you’ll most probably be given some (same as Corsodyl). This is not easy to do when you feel rough but it will reduce the risk of mouth ulcers which can also hinder your intake of food and increase risk of infection.

You’ll have a great medical team around to care for you, take each day at a time, some are easy, some aren’t but you’ll soon be through it and on your way to enjoying the summer.

Hope this helps, happy to answer anything else.

Matt

[mattkboParticipant]

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

[mattkboParticipant]

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 oats, olive oil, banana and sultanas, mixed up and baked for 15 mins. (Really hoping reading this does not make you feel unwell)

Anyway take care, hope you get home soon.

Matt

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