[handbagladyParticipant]

Sharon, that's really positive news and it's fantastic the hospital are responding so fast – that is brilliant. Treatment every 21 to 28 days for 4 months does not sound too bad either and Eric can have plenty of rest at home between hospital trips. I'm so glad you're feeling better – A diagnosis of MM can be a really worrying time and you need to look after yourself too, as the stress levels can build up. Hope you're OK, take care Jo.

[handbagladyParticipant]

Hi Mollymoo,
So sorry to hear that your husband has been diagnosed with MM and I sincerely hope the medical teams in Bulgaria can treat him quickly. My dad also has MM and when he had his treatment, he had an injection of Velcade (a chemo drug) once a week and he took steroids orally at home…If your husband is on a similar treatment, is it possible that this could be done closer to home?

A 5 hour round trip to the hospital could be quite tiring for your husband when he starts treatment and maybe like you say, some procedures could be done closer to your home. If not, would it be possible to book an overnight stay in a hotel or b&b close to the hospital the night before?…That way, if the weather turns, you could have extra time to get there the day before, and you would have a comfortable place to stay close to the hospital before he has his treatment the next day. It is a bit impractical but is just a thought if the weather in Bulgaria turns horrible.

Let us know how he gets on – I'm sorry I can't offer any advice about how fast he could be treated in the UK, I don't have any experience of this…I just wondered if there is a help line for the NHS that you could call for advice. Perhaps they could give you some answers.
Take Care, Jo x

[handbagladyParticipant]

To each and every one of you who have replied, thank you so much!

Eve – I really appreciate your explanation of what the paraprotein levels mean, I can completely understand what you have said, many thanks and I hope you are doing OK.

Tanya – The distance between myself and my Dad is really hard at the moment as I want to do all I can for him. I have had a good long chat with my other half and we both know that when the time comes, I will leave for a while to be with my Dad and Mum. I also have 2 young children age 2 and 4, so leaving them will be very difficult as I have never been apart from either of them.

Vicki & Colin – I am holding on to the fact that an increase from 3 to 8 does still seem a low figure (now I fully understand what the numbers mean from the reply Eve gave!) and thank you so much for your support. My Dad has never had any problems with his kidney function either so that is another positive. However, his first symptom of MM was extremely bad back pain, and since ending his treatment in July, the pain has returned within the last couple of days. My gut feeling is that the MM is attacking his spine and pelvis again and I am so worried because seeing my Dad in agony before and after his diagnosis last year, was truly awful.

Ted – Thanks again for your replies. My Mum goes with my Dad to all his appointments but it is as if they don't want to know what the results and numbers mean. My Dad had prostate problems 12 years ago and knew absolutely everything there was to know about his condition but this time with the MM his thirst for knowledge has gone. Both my parents are very protective of me and maybe they do know more but are keeping it from me because I have young children and am so far away from them…I just don't know – It feels like such a difficult time at the moment. On a brighter note, we will all be seeing each other in 2 weeks time and I so hope Dad is well enough – The phone and Skype will have to do for the time being!

Thanks again for listening! All the best, Jo x

[handbagladyParticipant]

Hi Catherine,
I too am a newbie to the forum and you and I are in a very similar situation. My Dad is almost 80 and has MM – His symptoms of tiredness, aggression, mood swings and shaking are the same as your Dad and for us both, as daughters, it is extremely difficult to see our Dads going though such a difficult time.

I am almost 400 miles away from my Dad (he's in Essex and I'm in Scotland), but we speak on the phone and do Skype calls on the computer all the time.

We as a family are just taking one day at a time at the moment because the initial treatment my Dad had did not work too well and he may have to have some further treatment beginning in November (depending on his blood test results).

To be honest, I am not sure how much more medication he can take given his age and fragile physical state at the moment, but there are things we are looking forward to and it is these milestones that we are focusing on.

A lot of the side effects of the drugs for MM have become much less severe for my Dad since he finished his treatment 2 months ago and you may find this happens to your Dad too. He may be having a very difficult time at the moment, but with your continued love and support, he can fight MM all the way.

I really hope you're OK – best of luck with your studies and I hope you are enjoying Uni!
Take Care, Jo.

[handbagladyParticipant]

Hi Ted,
Thank you so much for your reply – it really means a lot as I don't have many people I can talk to about MM, and I hope you are doing OK – Smouldering MM sounds quite different to what my Dad is going though and I did not realise that MM can affect people in so many varied ways. I see what you mean about it being a very personal illness.

I've been on the phone to my Dad this evening and it seems as though the consultant who did the follow up appointment with him was a little concerned at the jump from 3 to 8 (it has only been 8 weeks since he finished his treatment).

He wants Dad to have another blood test in a month to monitor the para protein levels and only then can a decision be made regarding further treatment. He has been on Velcade and Dexamethasone, and is still having monthly infusions of Zometa for the damage in his pelvic & spine areas and since ending the treatment, he is feeling a lot better.

I suppose that being his daughter, I am nervous, scared and worried what the future holds at the moment because I had hoped that Dad would have some good quality time in remission, but the appointment did not bring us that news.

Thanks again for your reply! Jo.

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