[petesilverParticipant]

I hope all keeps going well, my first five cycles gave me another two years in remission, but as always with mm it comes back so I am on it again now and it seems to be working again but will find out more today.

 

[petesilverParticipant]

I expect I am wrong but I often wonder why so much is made of having more than one SCT, perhaps I was one on the unlucky ones it took 3 attempts to harvest enough cell just for one SCT however it all went ok I came through it, but the downside it only lasted a year, since I have had various drug treatments which gave me far better remission periods, one Velcade was 4 years and side effect of than is far less than a SCT. Peter

[petesilverParticipant]

Hello Karen

Chin up and try and keep positive I was diagnosed in 2004 and still her  after various hairy drug treatments.

If you have a sore that wont heal try a few sessions of HBO can’t do no harm but the oxygen might help it to heal. I can’t go into any detail here but I have been having weekly hbo since 2005, has it made any difference!! who knows!! but I see all sorts of people there not just the MS patients who the centre is mainly for but all sorts of people try it for various conditions ,ulcers that won’t heal, burns. broken bones, ME, I guarantee nothing it all a personal thing but it amazing the people that find us(sorry I say us as I volunteer as a helper for the charity).

I must not go on any further as it all a matter of choice.

Regards

Peter

[petesilverParticipant]

Hi hl

I was on that regime for eight months, side effects are always different funny but now I can’t remember any but the main I had 4 years remission which i thought was amazing, but since then i have been on lenalidimide on and off

I can’t see that this is a new trial as I had it over six years ago, still i suppose all hospital are different.

I hope your husband improves soon some side effects of these drugs are very unpleasant and not everyone can tolerate some of them.

all the best

Peter

 

[petesilverParticipant]

I can’t really remember how long, people use to say how nice if looked as my hair was silver grey, but as I said every time I had it cut the more it was back to its ordinary state.

But I know how fussy you ladies are when it comes to your hair, my wife is just the same its never just quite right, even after going to the hairdressers. So just go with the flow and remember staying in remission is more important than your hair.

Regards

Peter

 

 

 

[petesilverParticipant]

Hello Rebecca,

Yes after my SCT my hair grew back nice and wavy I was hoping it would stay that way but sadly its now all back the normal straight look, I think you will have to bear with it but I am sure eventually you will get back to your original style but it just takes time and a few hair cuts.

Make the most of what you have now it won,t happen again.

Peter x

[petesilverParticipant]

In respect of Kimanaya’s  posting it almost put all this argument to bed could any of us afford to cost of living in the US, it puts the treatment most people receive from the NHS is good ,if not you are at liberty to change hospitals.

 

[petesilverParticipant]

Hi Jean

Think when you feel like that eating seems secondary but I am sure it will pick up, sorry to say it again but it it so uncomfortable and you feel desperate because there is not much you can do. I still take aciclovir daily to stop it coming back even now which I have been told to carry on doing

I know when my son was pickled with chickenpox spots (shingles is caused by the same virus) all we could use was calamine lotion I’m not sure you can even buy it now.

I hope you soon get the MRI scan, should chase it up, with  my consultant I get it within a week and I have had many since diagnoses in 2004.

all the best

Peter x

 

[petesilverParticipant]

Hello Jean

He has all my sympathy, I had a severe attack of shingles on my thigh up to in a very delicate place 🙂 and was actually hospitalised for over a week and put into isolation and on  intravenous drip of  Acyclovir  nothing seem to help very much I was slapping on cream they gave me but to be honest it was not of much help really, someone did suggest Aloe Vera gel which I did use I think it helped a bit.

I do hope you can find something that might help relieve it, unfortunately the doctors do not seem to have any answers for is I found pain killers did not even help.

Sorry to send such a miserable message, I do feel sorry for Frank, shingles is horrible and for me it was almost as bad as my SCT.

[petesilverParticipant]

Well done Michele, anything that keeps us going has to be good and long may it stay that way.

Peter

[petesilverParticipant]

Hi Sue

This is such a difficult question to answer, really you should discuss it with your consultant, you have to put your trust in someone or try to get a second opinion.

I know several people who have benefited with long remissions and some even had a second STC because the first was so successful, unfortunately mine only lasted just over a year but since then the new drugs available have kept me in remission except for a few episodes.

Really only you can decide, try and get all the information you can and speak to many people especially those that have been through it.

Peter

[petesilverParticipant]

Well put Andy, you said it as it is, the problem with MM is that no two people are the same, treatment for one does not always work for someone else, for me I have had nothing but good treatment some works some don’t.

As I have said before there is an element of trial an error in the treatment of MM and I don’t think we can get away from that but I am sure the haematologists do their best with what drugs are available to them.

I hope all you current treatment goes well.

Peter

[petesilverParticipant]

hello Sal

I see you have already had lots of advice and your husbands journey sounds much like mine.

Having had mm now for over ten years and been through several lots of treatments two things come to mind one is never feeling like eating, my wife use to cook nice meals only for me to say I’m not hungry but being the wonderful wife she is never complained, she is the one that got me through the worse times. I know that at times you always take things out on the one nearest to you, it’s a terrible thing to say but when your down these drugs do funny things.

Enough of that and I hope his treatment goes well

x Peter is

 

[petesilverParticipant]

Hello Scott

I have been having HBO on a weekly basis for over five year now but under pressure as that is more beneficial but before I started I did contact a professor at Dundee university who was an expert in HBO, because I did not want to compromise the treatment I was having at the time and if I change treatments I always ask them.

Now can I say it has helped ?? Impossible to quantify but it has helped with keeping up my hemoglobin and energy levels, the one thing I always remember that the professor said in his email is that cancer hates oxygen I hope it does help you.

Regards

Peter

 

[petesilverParticipant]

Thank you Ellen for your posting think it put everything I into perspective, I think most hospitals do their best with in the constraints of what Nice put out, but unfortunately money always comes into it somewhere, people keep going on about the America and how the drugs are always available but what they don’t realise isd the large sums of money they have to pay.

Still I think this posting has had a negative effect on this forum, as most of the posting are of a good or positive nature and long may that continue.

 

 

 

 

 

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