[valgrebezsParticipant]

hello Colin, big decision for you.  My husband Peter dx Oct2014, had radiotherapy,6 sessions then 12 months of Chemo, and an SCT last December 2015.  he tolerated the Chemo really well but did have 2 bouts of Pneumonia in that time. SCT went OK but really bad chest infection even after that. Was told in Feb that he was now in Remission. he was offered a Trial after his SCT this was at the Royal Marsden where their Research is brilliant but after many conversations, his own thoughts and talk with Consultants, he decided against it and I can understand why. Well, he had being having all kinds of treatment and his SCT and Trial was a ‘blind’ trial. he would have had to  attend hospital every two weeks for 2 years, that was too much for him to do, and for me also. After all that he had been through he just wanted some kind of normality, we had just bought a house in France where friends live, only the month before his diagnosis.  His Consultants told us that even they don’t know who is getting the real drug or just a placebo. Yes, later on in the trial, the Consultants might guess who has had the real thing, maybe if some people suddenly had amazing results, but it was not for him at this stage.  Imagine living with that, 2 years sometimes feeling rotten and always wondering if you might only be taking an ‘aspirin’! Not for him and not for me either.   It’s not been easy even after SCT as he foolishly went to Dubai for 2 days for a business meeting, came home with a cough and 2 days later Pneumonia again and still not recovered properly.  My fault in a way as I work for BA and get tickets so he pestered me until I got one for him……..  never again.  If ever it gets to the stage where he is in dire trouble (as if he isn’t now) and it was not a blind trial, then he would go for it.  I am obviously not the patient but I would always take the SCT first, if I were the patient.  sorry for rambling but I am literally just putting my thoughts on paper.  Talk more with your Consultants, find out what kind of trial, a real one or a blind one, for starters. Go with gut feeling as Rebecca said but be armed with as much information as possible. Ellen, one of the Specialist nurses for this site is wonderful she will answer lots of your questions and give you any information that she can. first find out what kind of trial exactly,  normal or a blind one and what are their views.  it’s a lousy disease and so many people haven’t heard of it, they all think it’s Melanoma!!!!!! Where are you being treated?  I wish you all the luck in the world and have to say it but Welcome here and to the Murky world of MM. It’s a struggle but one way or the other…just go form it.  with love and best wishes. Val x

[valgrebezsParticipant]

Thank you Jeff, will

pass this on to my husband. xx

[valgrebezsParticipant]

Hello and thank you so much for your replies. Mrs ‘Zombie’here as had no sleep last night as husband was in agony.So ‘Zombie’ I am today.Just for info, he has a lump on his back wich has reduced, but not enough. Consultant doesn’t talk much about paraprotein levels and I have taken
the advice of all of you. Written letters to Consultant which Peter will deliver tomorrow when he has Chemo. Today, wanted to e-mail Consultant, but telephone operators didn’t know who he was!!!!!! and no e-mail address!!!!! That’s what wrong with the NHS, no communication. I called 111 very early this morning and eventually a lovely Doctor arrived, Peter thinks he has Sciatica but I have a feeling it’s Neuropathy. But to cheer you all up, his friend, a GP has this and has just bought a Porche. There’s hope there.
and now he’s sleeping. Unfortunately, I have to go away on Wednesday and won’t be back until 26 March
but a close friend will stay and be with him. Thank you all so much, what would I do without this site.
Val xx

[valgrebezsParticipant]

Hello Tracey, Sorry a bit late in replying to your question but my husband Peter is the patient so I understand how you feel. He is presently in hospital with slight (slight, what does that mean), Pneumonia. Also, he hates hospitals and the boredom. Funny thing is that I can’t cry, only rarely, wish I could as it all seems to be inside me, stopping me sleeping etc.

It’s a long haul but this site and the Nurses are extremely good and will answer most of your questions. It is scary though, as most of us had never even heard of it. Peter’s Chemo was cancelled yesterday as he was not well enough and when I looked at him yesterday he has aged in the last few months. I also didn’t realise that when Chemo starts to destroy the immune system, Pneumonia can sometimes (not always) just happen. I just hope that this isn’t the start of infections or complications as he has coped brilliantly, but how they cope with it themselves, I just don’t know.
I get exhausted, waking up at 3 or 4am, calling paramedics etc yesterday he woke me up at midnight, couldn’t breathe properly, paramedics, ambulance etc, no sleep. I just felt ‘spaced’ out all day, hadn’t eaten, couldn’t make visiting hours last night, only in the afternoon. But, they must be very scared. Please just take one day at a time Tracey I’m sending all my love and try to be strong for him as everyone says on this site. Not easy but you can do it. Val xx

[valgrebezsParticipant]

Hello David and Thank You for your message. Peter has been admitted to hospital as he has pneumonia. not too bad but still, he’s stuck in there. he seems a,little hunched and now doesn’t seem so tall.
Good luck for everything, what a lousy illness this is. Val. London

[valgrebezsParticipant]

Thank you Finn. xx

[valgrebezsParticipant]

Hi and good morning at 0741.
Sorry to bore you again. We have a Specialist Nurse who is really not contactable. A Macmillan Nurse who we thought would be more sympathetic. And questions, lots of questions!
why can’t we get some answers?
My husband is sleeping in one of our spare rooms, propped up now with pillows and he actually slept last night. But, agony this morning. The nurse has promised to get us a hospital bed at home. A stair rail (we have 3 floors) and a rail in one bathroom, we have another shower room and that is OK. It was her suggestion.

But, when I mentioned the Royal Marsden, she said that it was too soon!!!!!! I freaked out. the Marsden have said they want us to to go there and meet asap to discuss future needs. Does she mean, he will not be suitable for a stem cell transplant, will someone tell us please. Val G. and thanks xx

[valgrebezsParticipant]

Thank you Jane, Guess we are making the right choice. Val G

[valgrebezsParticipant]

Hello Cygnet, Sorry I have only just seen your post. First of all, there is a Marsden in London and one in Sutton. My husband is having chemo and all the initial tests at St. Peter’s in Chertsey Surrey.He had radiotherapy (5 sessions) at St.Luke’s in Guidford. But, I now want him to see a Pain Specialist
as he is always in pain and it’s about time it eased a little. We are seeing radiography again on Wednesday but now I’m getting certain that when it’s time for the stem cell transplant I want him at the Marsden.
Good luck with your choiuce and keep on posting. Val G

[valgrebezsParticipant]

Hi Maureen,
Thanks for that, makes me feel better. Val xx

[valgrebezsParticipant]

Thank you Maureen for the information.I forgot to say that his stomach has swelled also, looks he’s about to give birth and he’s not a fat man. Val x

[valgrebezsParticipant]

Hello Kim
I too would like information on this subject. My husband has only just started his treatment, he has finished radiotherapy and so far has had around 8 chemo sessions and another today.He is being treated at St Peter’s Chertsey but I would like him to be at the Royal Marsden when it’s time for a transplant. It has been highly recommended. Good luck and Happy new year. Val

[valgrebezsParticipant]

Hello Andy and Richard, it’s a very confusing journey and thanks for your replies, which explain the Dex days. Peter also has some sores on his legs and swollen ankles, is that the chemo? Val

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