Thank you for coming back and updating. i mainly hang out on the uk MM facebook page these days not here, although this is also a wonderful place to be.
I’m glad you’re living your life to the fullest. I’ve retyped a sentence several times, but it doesn’t come out right, so i shall just say, Slim was a lucky man to have you, and we’ve…[Read more]

Andrew did his first facebook posting today. Off a ventilator, and first session with physios to get him walking again.
As Tom says, onwards and upwards.

lost of people have posted lovely support to him and his partner.

I am so sorry to read this. He was a lucky chap to have you so staunchly by his side. xx

sorry, i should have been clearer – soap and water are top of the list. our hands and faces have never been cleaner!
Philip was told to eat as though he were a pregnant lady, so yes, some foods are avoided. (i’ve told him this does not mean claiming to crave cake and chocolate!)

one of the reasons that REvlimid is given in 3:1 week schedules is to give your bloods a week to recover.
My husband is often neutropenic by the end of the cycle. He takes GCSF once a week to boost the blood count. I think it is GCSF but could be something similar – basically growth factor i think – same stuff you take…[Read more]

just a quick post – hubby has been on dex and rev for a year now, back in remission, but staying on for maintenance and suppression purposes- (diagnosed 3 1/2 years ago).
he gets tireder each cycle – saves his energy for what he wants to do, so doesn’t do much excercise – particularly as he got a lot of bone damage.
Our doctor says it’s…[Read more]

I am so sorry to hear this. It breaks my heart to read this. I was just browsing the news section full of hope for new treatments, and then the reality strikes again.
I hope that you can get Colin home as soon as possible, and have some quality time with him, and that he stays infection free for a very long time.
wishing you both…[Read more]

sorry to hear this. as Tom says, onwards and upwards.

For us they started retreating at a point after the paraproteins started rising and before they thought it would cause damage. His leg snapped at 30 so they started new regime at 12-15. I guess it’s different for each and another reason why this disease is so individual.

I am sorry for probably being very thick here, but please can you explain what you mean by non-malignant Myeloma. My understanding is that either you have smouldering Myeloma which does not cause damage, but which can progress from smouldering to Myeloma “proper”, or you have full on Myeloma which probably needs treatment.

If he has severe…[Read more]

I know there that this awful disease is generally one way only. I sincerely hope for a cure, but don’t expect one in the time left to my husband. However, the hope we…[Read more]

Sorry Stuart, i completely forgot to pass on your best wishes.

well as we thought, Philip will move to Revlimid next week. What we didn’t expect was Dr Boyd implied that the evidence for the benefits of an allo outweighing the risk are not proven sufficiently for him to recommend it. I am not sure why. he said he was at the european…[Read more]

Thank you. That’s extremely helpful and I am so pleased you’re doing well, long may it continue.
I’ve found jet and her blog and Facebook page and read everything there.
Thanks again

Thank you for your ray of hope. I sincerely wish you get 45 more years with it.

Yes, Eve, the Marden did the tweaking to get velcade as maintenance. It didn’t last long, but was better than nothing. x

you are always helpful, whether you’re replying directly to me or others.

We’ve been very lucky. As Philip had his SCT at the Marsden, we had the benefit of Prof Morgan’s input into his treatement. When we had the velcade, he was the one who said don’t go for the allo as soon as it’s in remission, but stay on velcade as long as…[Read more]

Our doctor didn’t even give the option of cyclo or not, when Philip went on Velcade it was Velcade Dex and Cyclo. He was “allowed” to drop the cyclo for the last cycle as it had just about disappeared by then.

Hope hte 2nd opinion works.

I’m so sorry Andy, I meant remission for Philip seems easy, but it bounces back quickly for him. I appreciate the fact that it’s not even possible for some. I absolutely didn’t mean to imply that any of this is a walk in the park at all. I’m pleased for you that pomalidomide is available, that may be an option for us if we don’t go down the…[Read more]

I am sorry if i implied that everything coming from India is bad. Not at all. I just worry about getting drugs from a long way away, and not through your own regulated pharmacies to ensure the quality of what you are getting.
I have to say, i would be tempted myself if i were in the same position, to grab life however possible and scream…[Read more]

I am really sorry to hear about the lack of options in Australia, but to be honest everything in me screams “are you crazy????” at thinking about ordering drugs from overseas, or is it from the internet? i can completely understand the overpowering desire/need to do something and get treatment, but getting something where you cannot have a…[Read more]

The more I read on various myeloma places, and cancer places in general, the more i object to use of the word “carer”.

Yes, of course, there are times when the family members of those diagnosed care for our loved ones. But there are plenty of times when they care for us, or don’t “need” care as such, and we’re the ones on the floor…[Read more]

In the same boat, but it’s the PP count not FLC that’s rising. We’re waiting for the 2nd test to see how quickly.
I’ve been absolutely gutted by this too. I keep imagining the worst while Philip just focuses on what he has to do next.
It’s a bitch. It’s unfair. But while we have hope we have to put our big girl pants on and get back on…[Read more]

I didn’t realise you were in Deal. My aunt and uncle live there. Our children are visiting for a few days in the summer and live going to play by the sea.

I’m sure with your experience so far you won’t be content to trust they do it right, but I hope they do.

Myeloma sucks doesn’t it!
We had the routine appt yesterday with the consultant – unfortunately it’s detectable again, so we’re waiting to see how quickly the numbers go up before deciding what to do. Before Velcade it went up quite quickly so we’re hoping that at least velcade is pushing back a wee bit so that it slows down.…[Read more]

Please can you clone yourself at least 2x, then send one clone round all the hospitals in the country teaching the doctors, whilst the other doubles up for you so you can rest from time to time.

I take my hat off and bow deeply to you, and hope that if and when necessary I shall be as good an advocate and carer for my husband as you…[Read more]

You and your family have just stepped through the looking glass. It’s not a place any of us want to be. (it’s my husband who has MM not me). Yes, it’s frightening and scary, but you can adjust to the new reality. It will take time, but give yourself permission to cry. It is a form of grieving.

One thing i read recently was…[Read more]

I don’t think you can get an answer to your question. That’s the delight of MM. You can ask averages till your blue in the face, but historic data is just…[Read more]