[bandityogaParticipant]

Ian and I spent a night in Gleneagles, it was wonderful, staff very friendly and helpful. We had a superb meal in the Andrew Fairlie restaurant. It is expensive but it is our first break away since Ian was diagnosed in October 2012.

Meeting with consultant on Monday to discuss when Ian is going back on treatment as FLC rising.

Maureen

[SalParticipant]

Well done on getting away, Maureen. It sounds lovely. It is so important to have experiences that take you away from the daily routine and give you good things to think about. Sounds like good timing too.

Enjoy the weekend and I hope Monday’s appointment is positive.

Sarah

[EvaParticipant]

Dear Maureen and Ian,
Delighted about your outing. Hope Monday goes well. Am living in London -alternating between B&B and hospital. Am about to begin 3rd course of c-Pace. Am weak but fine. I’m responding to treatment. Was even able to met a friend in an Italian restaurant for lunch today. Will possibly have second transplant. By that I mean in addition to the one I had five years ago.
Eva

[eveParticipant]

Hi Maureen

Glad to See you managed not just a break,but a posh one lol.

Glad to see you posting again Eva,you must feel down not being in your own home,B&B plus hospital,is no joke,I suppose it’s the only way forward,will you go straight into another SCT from treatment!!!!,which hospital are you at in London!!!

I hope you both Ian and Eva find the treatment easy going,either in Scotland or London. Eve

[HelenParticipant]

Dear Maureen
Good to see you and Ian have managed to get away at last, hope this is the first of many trips.

And Eva how good to see you are responding to treatment, I was wondering how you were getting on. As Eve says b&b can’t be much fun though. Will you have second SCT in London?
Love Helen

[BADGERParticipant]

hello Maureen
so glad to see you have managed a break it must have done you both good
regards jo

[mhnevillParticipant]

Hi Maureen

I too am delighted that you and Ian got away. Especially after such a bad year. Isn’t it good to feel ” normal ” again!

Here’s to your futures!!

Love

Mavis x

[bandityogaParticipant]

Hi all

Thanks for your good wishes.

Eva nice to know you are responding treatment, we must meet in Edinburgh when you are better.

Saw consultant today and even though Ian’s FLC went down a little he will start Velcade on24 March. We must get away for a few days before.
Eve
I ask consultant about new MRI scan and he didn’t know about it. Also said it would not be available on nos! I also askedabout a pet scan and he said it was irrelevant . Also wanted to know how much bone damage Ian had but would have to look back too many notes. I’m not too happy with that.

Love Maureen x

[eveParticipant]

Hi Maureen

Make sure you get away for a holiday before Ian starts treatment??

I often wonder about haematology consultants,how much they keep up with things,I suppose we are lucky to have Myeloma UK because I get a lot of information from the news letters that they post also follow them on face book,so it saves me often looking for info,and we have Ellen and Maggie for info.I suppose you could always get in touch with them and ask for an info sheet on it,
If you look into the video,s on here,there is info on Imagining,but in the circumstances of Ian having many months with no treatment!!! I would have thought they could at least do full body x rays and compare,!!!,they tend to use PET scans to track Myeloma,but as quoted to me (it will not tell you what is going on in the bones )

Will Ian be going on trials or just CDV!!!!,because there are trials !!!! Again get in touch with Ellen and find out if any trials near you,or just put in trials at the top of the Page,there is a big section,telling you were they are all over the country.it is worth asking if I am correct it’s randimised choice Velcade or a new drug cannot remember the name,as Slim did not stand a chance to get on them. I think Wendy tried for it but got Velcade,but Debra Bones got the new drug!!!!,a little unsure here!!!!!

I hope you get some answers ????as I think you both have had a bit of a rough deal Ian in hospital for a year!!!,you need to know what you are dealing with.Love Eve

[dickbParticipant]

Just a point about MRI /MRT scans. We attended the 10th anniversary do of the local self help group and they invited some of the top medics to attend and give lectures. One of the things that came out is that an MRT is more accurate at determining the level and positions of MM in the body. My German is a bit poor but the gist was that with MRT they can even identify it spreading into other bones like shins and forearms. The technology is amazing but the images they displayed showed little areas of light in the bones that they believed was MM. This sort of stuff blows away the present view that MM is only present in the larger bones.

The downside is that MRI/T is so expensive that they are unwilling to use it as a replacement for BMB here, even though it gives a far more accurate picture of MM in the body.

[bandityogaParticipant]

Hi Eve

Consultant only said Ian would have to1 injection of velcade a week and be monitored every month. Going for pre assessment next Wednesday so I will take my notebook and ask questions.

No trials on this site showing for Scotland.

Hope Slim is responding to treatment .

Maureen x

[bandityogaParticipant]

Hi Dick

We do not have the new MRI scan in Scotland but we do have privateinsurance so it might be worth looking into that.

Hope you are making good progress after your SCT .

Maureen

[dickbParticipant]

Hi Maureen,

I believe MRI scanners are hideously expensive to buy and run, MRT are even more. With hospitals in Germany being commercial businesses they tend to buy them because they know they will make a return, although not every hospital has them. I believe it would help you and Iain understand the extent of his MM, I had an MRT in November prior to Stemcell Harvest, the doctors used the scan to check everything from bone damage to condition of organs, I was also given a disc with the full scan on it, can’t tell you what it means but I certainly know what I look like inside.

as for me post SCT, just getting over 6 days of Diarrhea/ vomiting. The Doc says it’s either something I picked up from our daughter, something I ate or down to the damage done to the stomach by the Mephalan. Although my daughter’s put my immunity system to the test with coughs, colds and Slap Cheek Syndrome, I believe it is the Mephalan, back on the up now.

Anyway, now you’ve had a bit of time away, you need to plan the next, something for Iain to aim for.

[eveParticipant]

Hi Maureen

We will not know for some time if treatment is working,but in general is bloods and health are a lot better,plus he has just had a chest infection,but held his own with antibiotics ,so to me that is a measure of how his immune system is a lot better. His pain levels are better,you can tell just by his body movements,so I do think he is responding to treatment.

Slim never had many side effects on Velcade,and responded well last time,so it’s all good news at the moment,it is a bit of a worry that Nice are instructing consultants to decide the medical evidence by the imposition of socio-economic criteria,effectively to the great detriment of all senior citizens!!!! But we will see what the future brings.

It is amazing that Myeloma UK is based in Edinburgh,and you do not have trials there,or am I mistaken in this. Eve

[bandityogaParticipant]

Eve

Phoned Maggie and she informed me that it is the same MRI scanner but with new software but it is not readily available yet. It still has to be proved. She thought that due to Ian’s 20% plasma cells from BMB that is any he will be starting treatment but he is on the border line.

Our specialised unit for myeloma is in Dundee and she suggested that we contact them if we need a second opinion but it is over an hour travelling each way. If we are not happy with treatment we will travel.

Looking to go away for a few days to a nice hotel in Scotland. Ian doesn’t want to go abroad yet.

Hope all goes well.

Maureen

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