[dickbParticipant]

Good news Andy, Does it have anything to do with attitude? Enjoy the rest of the summer.

Richard

[dickbParticipant]

Wey hey! Bit of a surprise. Good on you for doing it. If Colin can get to the Church then he can have the energy to ensure he enjoys a lot more time with you.

What about the honeymoon?

[dickbParticipant]

Fatigue comes from the Dexy. It is one of those things that cannot be helped. Unfortunatetly that is the way it is. The thing is both of you need to reassess what can be done and what can’t and then readjust your lives accordingly. Life will never be the same again, it takes time to adjust to the change. Expecting things to be how they were will just lead to dissapointment for both of you.

[dickbParticipant]

Hi Vicki,

Very sorry to hear your latest news. As I said before, it’s not over until the fat lady sings, strange things have happened in the past and can again. Be prepared for the following emotions from Colin:

denial, anger, hope/ wishes for the future, depression and acceptence.

He must believe there is hope. Having read your many posts in the past you remind me of my own wife, Colin should be proud of the way you have coped and supported him.

I await the next post

[dickbParticipant]

Hi Carol and Maureen,

I was just so pleased I had to let it be known. Really it’s about not giving up. My original diagnosis was just weeks after moving out here. My original plans were blown out the water and it was a case of finding something that I could do to ensure that I have as normal a life as possible, hence the start of retraining for a new job.

The next goal is to pass the language exam in two weeks then find part time work. After that to do further training to improve my skill levels. We just won’t let MM dictate what I am doing – don’t let the tail wag the dog so to speak.

Anyway, we all have to decide what is right for ourselves.

[dickbParticipant]

Really sad to hear about your predicament. Just remember it’s not over until the fat lady sings. Who knows what’s around the corner. Is there no chance of a donor or does he have any Stemcells left that they can implant? Sorry if I sound a bit thick but sometimes solutions come from asking dumb questions.

If they are certain that nothing can be done for Colin then take him home so that at least he can have a bit of time with you away from hospitals and medics.

We are both thinking of you both.

Richard and Stef

[dickbParticipant]

Hi there,

I might fit into your criteria. I had SCT after 6 courses of VCD, my IgG dropped from 52 down to 36 and then leveled out. As I don’t live in the UK, there was no criteria of proteins to be below a certain level before SCT. Post SCT my IgG dropped to 24 and stayed there for just over a year. I am back on treatment again because since Christmas they have started to move up. I had a chat with my consultant last month as they want me to consider an Allo SCT.

I have looked into it and spoken to my GP and have come to the conclusion that it’s only worth doing as a last resort. Survival rate is between 50 and 80% depending on fitness, staging and age. There are no guarantees that it will work anyway. Recovery period is longer and more dangerous compared to an Auto SCT. As for having another Auto SCT, that for me will be a better option, however I have been warned that every SCT reduces the body’s ability to cope with maybe another SCT if needed. My consultant suggested that I skip a 2nd Auto and just go for an Allo – assuming that a suitable donor can be found of course.

Ultimately there are no guarantees. There are so many factors that need to be taken into account and the risks increase as treatment goes on. My own conclusion is to wait until the present round of treatment is finished and then reassess, to go for a 2nd Auto before considering an Allo and then review all treatments available then as well as those likely to come on stream. The mortality rate for Allo can make it seem like playing Russian Roulette to me.

[dickbParticipant]

Hi Vicki,

The Mephalan is there to destroy the MM and unfortunately it is non dicriminatory so does literally destroy the good cells as well. There is not a lot that can be done, it’s down to the medics now and Colin. Sorry I can’t be more positive, you just have to sit with it and I expect the medics are doing their bit as well.

[dickbParticipant]

Hi Maureen,

Sorry to hear Iain’s back in, still it’s probably the best place for him. As for me, my Heamoglobin dropped to about 10 so they were a bit concerned. I had another blood test last week, while they recovered my Leucocytes have dropped now. Still not doing too badly. I had the mock exam a few weeks ago and scraped by – blame that on it being in a foreign language. I have the final exams end of the month – a practical and a written as well as a German language exam. I don’t think I’m good enough with the German yet and being really hampered by the Dexy but I’m not giving up. I am going to sit the exams and worry about the consequences later. Not going to be beaten by poxy MM.

Richard

[dickbParticipant]

Good news he is home, there will be a couple of ups and downs but make the most of it.

Richard

[dickbParticipant]

I’m afraid we all go through the “have I, haven’t I stage” There is not a lot you can do about it. Be aware that some people have non secretary MM, that means it won’t show up by an increase in protein level in the blood so your husband may have to give a large Urine sample (taken over 24 hours) and a Bone Marrow Biopsy. All the best and I’m sure there will be a lot of people on the website that will be willing to help with any concerns you may have.

[dickbParticipant]

Hi there,

Yes blood tests can fluctuate although not by very much. Another factor will be if the samples are tested by the same laboratory. Different equipment will give slightly different results.

As for the cold, ear infection and sinuses, I’m afraid I had the same before diagnosis. I blamed it my daughter bringing home allsorts of weird and new infections from school which I wasn’t used to. The immune system fights infection so if it is compromised than there will be an increase in infections that will take longer to clear up. These are referred to as Immunoglobins with a sub 5 different sub goups – A, D, E, G and M, I suggest you talk to the Myeloma nurses at MM UK, I’m sure they can explain far better than me and I’ve found them to be very helpful in the past.

[dickbParticipant]

I wish you both well. It’s not easy – for the partners as well as the patient but others have done it and there is no reason why you can’t. Just lots of TLC required afterwards and expect the odd hiccup.

Richard

[dickbParticipant]

Sorry to hear about your dilemma, At least they are still talking of options and who knows, Colin may be invited to take part in some new trial or treatment. We just don’t know what’s around the corner. Although I have found the doctors here very good at putting a positive spin on everything, I also found them to be realistic. Your consultants view that it wasn’t a bad day probably is based on experience with other MM patients.

Colin’s still going and that initeslf is cause for optimism.

[dickbParticipant]

Thanks Andy,

I’ve only been on the treatment since Wednesday and already I have had the extreme tiredness. the warm sweats, diarrhea and constant itching of the scalp. I am not looking forward to the next few weeks. My concentration levels are really low which is a bit of a bugger because I have a possible mock exam tomorrow and lots of homework to do. Looking at the sheet for the Revlimid, all the above are listed as possible side effects. If it gets any worse than it’s an email to my consultant.

[Author]

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