[petesilverParticipant]

I wholeheartedly agree with Michele, I also could not have had better treatment from the NHS and when I needed treatment it was there, which is why I am still here after 10 years.

 

[petesilverParticipant]

Well done Phil keep it up, my SCT in 2005 only lasted just over a year but velcade & revlimid has got me this far with some good periods of no treatments.

Having MM can be a downer  but I think you have to be positive and carry on living a normal life as possible it will allow…..Pete

 

[petesilverParticipant]

Hi Tom
It almost self referral all you have to do is to sign an agreement form for the Centre.
I better explain the MS HBO centres are all independent charities who receive no funding so all monies have to be raised throughout the year so some if they have capacity do offer HBO treatment other than MS. I can only speak of the one we have in Exeter who have 2 tanks so at present capacity is ok, costings would be individual to the local Centre as they are all indenpendant.
Clearly the costs are kept to a minimum for MS patients but its not to extreme for others when the general procedure here is you normally start with a batch of 15 sessions close together then after that its up to you whether its once a week or whatever you feel the 15 are a fixed price but not at the single rate which the last time I asked was about £11 thats for an hours session but as I say I can only speak for this one they do have a web site so you might glean some more information….
http://www.southwestmscentre.co.uk

I know some of the private hbo centres can be extremely expensive I know one locally that charges over £100 a session. If you would like to tell me the nearest Town to where you live I can try to find out where the nearest MS HBO centre is to you when I go in again on Friday but as I said they all work independently
Peter

[petesilverParticipant]

Hello Tom & Megan
Before I go any further I have to say that having HBO is purely a personal thing I do, I did pass it over my consultant who was fairly none committal but said he had no objection.
Its a bit of a story but I will keep it brief, my wife and I help out at at the Exeter Multiple Sclerosis Therapy Centre who provide HBO for people with MS, however over the weeks I noticed that they we offering their services to people with other complaints as they do have spare capacity and it helps the charity funds, providing their own Doctor agrees they can use HBO, I noticed people with ME,Brain injuries, ulcers, broken bones and a whole list of complaints, so I looked into it further for myself, and the Centre has contact with a specialist in HBO at Dundee University they contacted him for me and this was his reply.

“Oxygen under hyperabric conditions would be, as you have already discovered a valuable way to improve
your recovery and would not compromise your treatment. It is actually a way of increasing your circulating stem cells and cancer cells are inhibited by oxygen”

So that is why I started using it and all I can say is it does help with the energy levels and does help with keeping my hemoglobin up which is always quite low so that’s it really, I do pay for each session but costs are reasonable, there are many MS HBO centres around the country but what they do or offer you would have to find out. So that’s it in a nutshell if you want any further information just let me know.

Peter…

[petesilverParticipant]

The problem with MM is that everyone is different, some drugs suit some but not others.
I was diagnosed in 2003 have had SCT plus other drugs over the intervening years and I’m still here not perfect but still in working order having carried on my life as normal with no special diets or the like.
The only different thing I do is once week I have Hyperbaric Oxygen (HBO) which is breathing pure oxygen while under pressure. Whether this has helped I cannot say, but it has done me no harm.

[petesilverParticipant]

problem is MM destroys your immune system so how would you cure that, in the end its that's which death not the actual myeloma.

[petesilverParticipant]

Hello Dennis
Well the Royal Devon & Exeter Hospital covers quite a wide area the pop. of Exeter alone is about 118,000 but people just get the wrong idea about a support group, we had great fun and friendship we had our sad moments but that's life and one has to remain positive even when going through a difficult period as we all have We know MM in incurable but with all the new drugs coming on line they are helping to keep as going.
Sorry here I go again.
Regards
Peter

[petesilverParticipant]

Hi Dennis
There are more than you think but it is difficult to get patients and/or there other half or carer interested in a support group.
I come from Exeter and a staff nurse started a support group in 2004 which I joined and in the beginning we had quite a few members and we did many things had talks by various people, did some practical things like painting (our effort in hanging in the waiting room in Haematology) although we discussed treatment we were on ect we never dwelt on it we also use to go go twicw a year for a meal together.
However it seemed almost impossible to encourage any new member to join our group, I think when you mention support group people get the wrong impression of what we were trying to achieve.
Unfortunately due to things beyond our control membership diminished and in 2011 we had no option to suspend the group as we only has three members left. It was a great pity as I felt we all got a lot out of it including some new friends who we still try to keep in touch.
My opinion is that newly diagnosed patients are afraid for some reason of what they might find out, but it was not like that and it was enlightenment to chat to other people because you then realise that myeloma affects everybody in different ways and treatments were different.
Sorry I could go on and on about our support group as I thought is was of the greatest help in going through a difficult time.
sorry for the long diatribe
Peter 🙁

[petesilverParticipant]

Hello John
The RD&E in Exeter has a purpose built Haematology Department ( Yarty Ward)consisting of its own reception area, having a day clinic and mainly separate ward rooms, this was mainly (65%)by The "Exeter Leukaemia Fund"(ELF)who still do Stirling work funding many project's and equipment.
I can't speak more highly of the treatment I have received. As I go every six weeks the have my blood checked sometimes its like home from home all the nurses know you.
As for the Support Group I was in it from the start in the beginning it was very successful and we did all sorts of things is was really good, but it proved very difficult to recruit new members, the problems Yarty covers a very wide area and members were beginning to find it difficult to travel for various reasons, so last year we decided to suspend the group but we keep in contact by phone and invariably see each other in day case when we are on various treatments.
It was a great pity really because the meeting were very enjoyable and you got to make some good friends.
If there is any other things you would like to discuss please feel free to ask. if you feel it might be easier I could give you my email whatever suits you best.
Peter

[petesilverParticipant]

hello Bev
First thing is to calm down 🙂 get all your tests done, then speak to your consultant, who I am sure will prescribe the best way forward, you have to put your trust in some one. I was diagnosed on 2003 had SCT and other chemo and still here and at the moment feeling fairly well.
I hope all goes well with your tests,the only problem with Myeloma is everybody is different what treatment suits one does no good for others.
All the best
Peter

[petesilverParticipant]

Hello Kathy
I live in Exeter and i cannot speak more highly of the treatment i have received, the RDE Hospital has a specialist heamotology unit for all blood disorders, I was diagnosed in 2003 and have received excellent treatment.
I can expand on all this if you want just let me know.
Regards
Peter
,

[petesilverParticipant]

How so unprofessional of that consultant, that sort of attitude is uncalled for as we all get worried when things start to go wrong.
My SCT only lasted a year (2005) but with other chemo regimes of Velcade or Revlamid I'm still here and currently in remission 🙂 and doing most things I want to which is not to bad for a 73 year old LOL.

Hope all goes well for you.
Peter

[petesilverParticipant]

Thanks Jane re holiday I only go in this country as travel insurance is to expensive, also had a bad experience with a holiday booked for Malta a few years ago when the week before a vertebrata collapse and was hospitalised and lost all our money. So Now I rather not take the risk.
But my children live away one in Halifax and one in Worthing so we visit then and living in gods county 🙂 its a permanent holiday.
All the best
Pete

[petesilverParticipant]

Well done Pete I know how it feels when you get news like that.
Regards
Pete

[petesilverParticipant]

Hi David
When I had my 8 cycles I remained in remission for 4 years which came to an end last year, now 5 cycles of Revlimid seems to have got me there again.
All the best for your Velcade treatment hope it goes well.
Regards
Pete

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