[MollymooParticipant]

Hi every one my Husband Eric has just been diagnosed with Myeloma. We live in Bulgaria and they have said that they can treat him and have mentioned SCT. The thing is, the hospital where he will be treated is a 5 hour round trip and with winter around the corner, I am so concerned that he might not even be able to get there if we have heavy snow falls and the Trakia Highway closes down.
I want him to return to the Uk for treatment but he is concerned that it will be months before he gets seen to and that at 67 years of age his treatment might be limited. He is being admitted tomorrow for more tests and staging and we will know more in couple of days what they have planned for him and if blood tests and smaller procedures can be done closer by.
So if anyone has any idea if he will get treatment quickly in the Uk I would be grateful to know. We will have his medical records translated by an official translator and he can stay with family initially.

Thanks for reading.

[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

[tomParticipant]

Hi Sharon

Sorry to hear Eric has MM and of course the problems about length of time it will take you to get to hospital.

How long would it take for Eric to get treatment here in the UK ?? well am sure he would be seen as fast as the rest because we cant hang about with MM.

Good Luck to you both in your final decision

Tom Onwards and Upwards x

[MollymooParticipant]

Thanks Tom and Jo for your reply's

Today was the day that we had to make a huge decision, We went to Plovdiv hospital as planned but before they admitted him I wanted a few questions answered. Firstly, would the S1 health insurance really cover everything and the answer was yes. The next was how many days per month did they think that we would have to make this trip and they said every 21 to 28 days for 4 months. I was so worried that we would have to keep traveling back and forth for each session or have to stay in hotels with every cycle, at 120 leva per trip the costs would have soon mounted. They don't have out patients here like the UK so for each cycle he receives he will be admitted for the duration so it will be just 2 trips, one to take him and one to bring him home. After a good chat we decided to have his treatment here. Eric's biggest worry was that it would take such a long time to get everything sorted and treatment started in the UK so he is very happy to stay here.

I don't know anything about which chemo drug will be used on him but his chemo will start in 2 days time after tests today and a 24 hour urine sample tomorrow, we will then know more.

All in all I think that it is fantastic that they are treating him so quickly baring in mind that he was only diagnosed 8 days ago.. The Professor apologized for the state of the hospital (it's a bit tired but spotlessly clean) but assured us that the treatment is first class and they are very positive about the outcome of the treatment. I am feeling so much better today than I have for the past 8 days and I think I will finally go to sleep tonight.

[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.

[andygParticipant]

Hi Sharon.
Sorry you Eric has had to join the small but growing band of MM warriors. Everyone's journey with MM is different. How the treatment works and the side effect vary wildly from one to another.
I seem to be a rare case on here and I don't want to worry you unduly but when I was diagnosed I was put on treatment straight away. With the the thought of 6 cycles of chemo, CDT for me, then a SCT. Well here I am nearly 2 years post diagnosis and still on chemo with no chance of SCT. Also when I first started chemo I was never away from the hospital with infections, back problems, X-rays and scans not to mention the dreaded BMB. Just my luck :-/ Lots of others on here have sailed through their treatment and I hope Eric does together same. Tom is a shining example of the way to do it – I think lots of vodka is his favourite medicine.
Infections are a big problem in MM because the MM suppresses the immune system as does the chemo therapy so watch out for temps over 37.5. As Tom says speed of treatment is important and if Eric has ANY problems get in touch with the hospital ASAP don't let him do the man thing saying I'll be ok!
Good luck to you both and I hope you have a long and successful journey.

Everyday is a gift
Use it.

Andy x

[MollymooParticipant]

Cheers Andy and I totally appreciate your honesty, this is not a time for rose tinted glasses and burying our heads in the sand. I did mention SCT to them yesterday and they said they were not sure. Eric had a heart bypass 10 years ago come Christmas and he has now been diagnosed with Heart Failure so I know that there are treatments others can get but Eric might not be able to. It is due to his heart failure and them assuming that his leg pain was intermittent Claudication that all his other symptoms have been over looked for so long.

This is today's update, copied from my fb staus…

Eric has phoned me and I haven't heard him sounding so happy for such a long time. He has been ill for 18 months and has only been given magnesium tablets so he is actually looking forward to his chemo as he see's it as the first step to getting him well and hopefully pain free. He has also had a visit from 30 English speaking Turkish students that wanted to know his life story so he has loved that too.
He is now out on the street buying nom noms and sitting in cafes. He will phone me again when he gets back to relay a message to me from a doctor about something that he hasn't got (thank god she wrote it all down, he's useless at absorbing info) and it is going to make his treatment so much easier and the outcome brighter. I am so emotional but in a happy way.

Also he has been told that he has to have another BMB and he loathed the last one and he said it was the worse thing he has ever had to endure and if they want to do it again he will walk out. When he had it done last week, they did it right through his bypass scar and he has always been very sensitive about that area of his body as 10 years on it still gets tender. This time they have assured him that they will never take it from there again but his pelvis instead so he is happy about that.

While I am here can I ask what his appetite might be like after his Chemo, I am busy making loads of healthy soups and calorie laden steamed treacle sponges for the freezer.

Thanks again for reading and replying, I will let you know whatever it is he hasn't got. x

[CarolsymonsParticipant]

I am in London -diagnosed mid April this year and the treatment via Ealing Hospital with the NHS has been amazing! I don't think there would be any delay in treatment if you decide to return to the UK. What drugs are they giving your husband?

Carol

[tomParticipant]

Hi Sharon and eric
Your more than welcome.

And am pleased you have got sorted where you will have the treatment Eric, am sure that's one big worry out of the way.
Now this SCT is a hard one to do with its problems re infections and the like but it is a doable just take it one day at a time and rest when your body tells you (and it will)
As for food well Eric you will lose your tast buds for a while and i was told to eat plenty before SCT as when I had it i lost all wish for food (but its back with a vengance Lol)
I had my SCT in 2009 and i sit here doing well and drug free 😀

Take care you two

Tom Onwards and Upwards xx

[MollymooParticipant]

Right Eric has phoned again and has tried to read what the Doctor wrote down and most of it is unreadable. What he can make out though is that there is no sign of renal disease, good news, and that he has high levels of IgA, I have no idea if this is good or bad. There is loads of other stuff written down but he has given up trying decipher it. I have asked him to phone me tomorrow when she comes back so I can speak to her.

[Author]

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