[brochoParticipant]

Well I am seriously inpressed by the speed which the lovely Prof Tobias at UCH has arranged my radiotherapy . I met the prof yesterday and he agreed rt was needed quickly and told me he expected it to be in 2 or 3 weeks So imagine my surprise when they phoned today to tell me the planning appointment is on Monday and its likely to start on Tuesday or Wednesday !! As I am expecting 5 consecutive days treament I wonder if I will have appointments on the weekend , or will they have a 2 day break . Professor Tobias did say that myeloma tumours respond very well to radiotherapy , therefore only 5 days treatment It will be great to get rid of this pain , Gaye I do hope you get your treatment quickly, its so draining He also said the decrease in pain is likely to be over several weeks rather than instant relief , which Sharon had already told me so I wasnt disappointed I will let you know how it goes love Bridget x

[GeorginaParticipant]

Hi Bridget

So pleased to hear they are starting your radiotherapy very soon. When my mum had the radiotherapy, she had 5 days but not at the weekend. She started on a Friday (as they wanted to get a treatment in before the weekend as they were concerned she was at risk of cauda equina) and then carried on on the Monday.

I hope you get pain relief fairly quickly. As you said, Prof Tobias says Myeloma responds very with RT.

Good luck
Georgina x

[zasrsParticipant]

Hi Bridget

So glad you are starting rx so quickly hope all goes well and you get rid of the pain!

best wishes

Sarah
ps hats still keeping us warm!

[MinParticipant]

Hi Bridget,
Im pleased to here they are moving apace with your RT. Peter had just one massive blast when he had it, at the outset of his diagnosis. It left him feeling like he wanted to throw up, and he had a red mark where they gave him a temporary tatoo, to they could hit the right spot. The red mark was a little like sunburn and after/sun took the sting out.
It was 5-6 weeks before he felt the full benefit of it but it was effective.
Like you he is going to start on Revlamid soon as velcade has stopped working. I suspect its because the tumour in his spine is kicking out more nasty filth than the velcade can cope with. Plan to discuss further RT to get rid of it at next consultation.
I do hope you dont have too far to travel to get to the RT appointments as I imagine you will be exhausted after 5days and planning too.
Good luck when it happens.
Please keep us informed when you start Revlamid as it sounds really good.
Min

[brochoParticipant]

Dear Min thankyou I must admit to being a little nervous for no good reason . I think your point about the tumour throwing out myeloma cells is spot on especially as they areon our spine. Unfortunately I will have to travel to London each day , although its only 30 miles it can be a pain on the motorway, but I would rather come home each day than stay in hospital. I hope Peter doesnt have to wait long before he gets his rt.We can compare Revlimid notes as go along and hopefully it will do the trick love Bridget x

[GayeParticipant]

Dear Bridget – really glad you are getting your RT next week. Brilliant and I hope that pain soon responds to the therapy. You are right about pain being so draining. I actually felt the tears welling up today as I couldn't find a comfortable place and then I got an MRI appointment for 27 January at my local hospital. If they get a cancellation they will contact me because they know about the pain.

Anyway good luck for next week and will be rooting for you to find relief as soon as possible. If you have any left over perhaps you could send it to me! I so hope that Revlimid will be good for you. I tolerated it on both occasions pretty well so I wish the same for you.

Love, Gaye x

[SharonGParticipant]

Hi Bridget
I am pleased to hear that you are starting your radiotherapy. I also had 5 sessions and not over the weekend (even though I was still in hospital!). Please don't worry about it compared to most of the other treatments it seems a breeze! I am just waiting for it to kick in yet- I think thats the hard part!
Love Sharon x

[brochoParticipant]

Dear Gaye and Sharon thankyou for putting my mind at rest Gaye I will have everything crossed for you to get your rt very soon . I was lucky in that I had a recent mri for them to go on which speeded things up Mind you I have always found UCH to be excellent at organising vital treatment It occured to me tonight that I am prepared to put up with any side-effects of Revlimid as long as it works, I realise I am at the stage where I cant be too picky now. Sharon I hope you start to feel the benefit of yours soon Are you glad you had your rt while an in-patient or would you have preferred to have travelled each day? It was not suggested to me but I would have refused , although I think I will be knackered by the end of the week –more snoozing !! love Bridget x

[SharonGParticipant]

Hi Bridget
I think ultimately I am glad I stopped in, it would have put so much pressure on my family taking me to each appointment (Its an hour each way!). And then getting home and my 7 year old may understand Mom is poorly- but only to a certain degree! I also needed my pain sorting out as I was in incredible pain when I was admitted, I couldn't sit down! I still am struggling to walk as the tumour is pressing on the nerves down my leg and I have very little sensation in the leg which also means I can't drive at the moment! I can't describe how frustrated I am at the moment! I am so hoping that this radiotherapy will sort it all out- the sooner the better! Have an appointment on Wednesday to see whats next though now.
Wishing you luck, and I'm definately still snoozing at the moment!
Love Sharon x

[BADGERParticipant]

Hello Bridget

So glad to heard they have arrenged your RT treastment so quickly it must be so awful for you to be constantly in pain (all of you ) it must be much easier to cope without it, its a pity you cannot stay at Uch rather than travelling but I expect you may feel more confortable at home. fingers crossed for the revlimid I am sure you will get on well with it everyone I have spoken to in my support group thinks it marvellous not too many side effects

Lots of Love Jo x 😎

[tinkerbellParticipant]

Hi Bridgit,
So glad that you are getting radiotherapy and so quickly it really is good to get on with it. I had RT three times last year and found that the pain responded quickly on all occassions. Like Sharon I had one episode as an inpatient which was easier as I spent all day resting and had no one to run after. I've found with RT that you need to rest as the travelling to and from appointments on top of the treatment does make you tired so look after yourself and take any help offered. Wishing you all the best with the treatment and fingers crossed you get fast relief.
Pamela xx

[brochoParticipant]

Thankyou all for your good wishes they are very much appreciated. Sharon I can see why it was better for you to stay in as seven year olds cant get their heads around mummy not being able to do what she normally does and I think its hard for us mums to switch off too mums . I hope you get some relief soon and I can understand how frustrated you must at not being independant, its the worst feeling. Hopefully your doc will have a plan to knock the blooming mm back into submission really quickly. Jo thankyou I have high expectations of revlimid too , I can put up with annoying side-effects as long as it works Pam I am trying to get all my backload of washing done this weekend so that I will be able to switch off next week mind you as it is I doze off at the drop of a hat so goodness knows how long my naps will be !!Just call me dopey from now on , no change really !! love Bridget x

[GavinParticipant]

Hello Bridget
Only just seen your posting so you have probably already had one or two seesions of radiotherapy.I had 5 days of RT in Poole hospital at the start of my MM journey, together with the dreaded DEX. The effect was immediate and I have had nothing except twinges since. I hope it has the same result for you. All the best.
Gavin

[brochoParticipant]

Hi Gavin thank you . I had my first dose of rt today and it was fine if a little chilly in the room , apparently the machines have to kept cool . Mind you the pain in my back is pretty unbearable tonight so I hope it does work quickly . How are you doing hope you are as well as can be love Bridget x

[zasrsParticipant]

Hi Bridget

i do hope that you soon get relief from the rt, there is nothing worse than nasty nagging pain, hope you are taking some good pain killers, boney pain so difficult to treat though.

best wishes sarah

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