Hello Annette
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
Hi Eve
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 possible, and then go to revlimid. he seems to be a big fan of revlimid and was very proud of the fact that some patients of his have been on it for 6+ years.
The docotr in Brighton then said, yes, there are some on it for 6 years, but they’re the tip of hte iceberg. the rest have gone. Mind you he also put us in touch with a lady who’d had an allo. She was one of 3 he knew of who’d all had one at the same time, and she was the only one we could talk to as the others had also gone.
We found with 2 competing opinions, we told the doctors to discuss it between themselves and agree something and the present us with a plan. i’m not interested in playing one off against the other, i want both minds working FOR us for the best agreed plan.
We’ve got a meeting with the brighton doctor on Thursday, and will then be seeing the Marsden shortly after, I hope to get their view. Thankfully, they are happy to collaborate.
My son is 9 and gets worried when dad has to go to hospital, so we warn him in advance, but day to day he sees daddy is ok, so he is fine. We are assured by his teachers that he’s a happy go lucky soul at school.
my daughter’s 12 and knows the name myeloma and that it’s a cancer. she’s more aware, and we talk to her more. she’s had some difficulties at school, and we’re not sure how much is caused by being 12, starting secondary school, and getting hormones and how much is this, but we have a good relationship with her. we go walk the dog, and she rants, and we hug, and then get on with things. her rants are mainly school related, but if that changes, hopefully she can still rant to me.
we’ve never hidden this from them, but try not to make it a big deal either. it’s going to affect their childhoods anyway, we just want to preserve what innocence we can until we can’t.
Thanks Eve
Jet has a good blog and manages the Allo page on Facebook. I’ll look at deb on the beacon, thanks, I’d not heard of her.
The kids are ok at the moment but I feel desperately sad for them.
Hi
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.
Wow! 5. That’s low. It all just shows how individual it all is.
Fingers crossed they find a cure one day.
Hi
CTD 4 cycles April – August 2012, auto SCT sept 2012. Relapse sept 2013 (on the 1yr anniversary!) velcade sept 13 – jan 14 with cyclo and dex thdn extended to maintenance just velcade fortnightly till now. Started relapsing April and risen from 2-9 in a few weeks.
His femur snapped in April 2012 which prompted the diagnosis when his level was 30 so they won’t let it get high enough to cause more damage.
As the auto failed after 12 months they won’t do another, so as velcade is failing we have to go to Revlimid, and as he relapses quickly we need to use the nuclear button now while he’s healthy enough to cope with it. We just can’t take the risk of running through rev quickly and having no other options.
Hi
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 Allo route, but the doctor seems to be implying that if we don’t do it now, it’ll be too late when the revlimid stops working as it works better the earlier in the disease progression it is.
With all good wishes
Fiona
Hi
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 and stamp to get the treatment necessary.
I wish you all the best, and urge you to be careful.
Hi
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 hope of knowing what is in it, surely isn’t the way.
Oddly, the biggest thing we have had to protect our children from us other people’s reactions, especially to the word cancer. Ours and older generations feel very emotional about it. We nearly all react negatively and fearfully to it. Kids don’t, or won’t if you lead the way.
For what it’s worth my advice is to stay factual, give as much information as you think they can handle and keep communicating but don’t push it.
Hi
when my husband was diagnosed 2 years ago at 46 our children were 10 and 7. He was diagnosed in a rather dramatic fashion when he snapped his femur. Clearly we had to tell them something.
They had previously read the children’s book “Germs” featuring Marvellous Myrtle and her immune system so knew all about the soldiers of the immune system fighting infections etc.
We told the children that unfortunately Daddy’s soldiers were all rubbish, so he had to have treatment firstly to get rid of what was making them rubbish, then we had to get the best troops out, clear out the rest, and then get the best back in to train the new recruits. (chemo followed by auto SCT).
this worked for a while and the chidlren saw daddy home and well and accepted it completely.
Unfortunately it came back last year and he had more chemo. We told them he was still having treatment for wonky blood. But by then our daughter now 12 had heard myeloma and cancer and so we discussed it with her and explained that yes it is a cancer. Daddy is having treatment, and as she can see, Daddy is ok at the moment.
She hasn’t asked about the future. I think to small children, Christmas is a long long way away, so trying to discuss anything further than next year is really pointless worrying. They know daddy is ok at the moment, they know he is getting treatment. If they ask, we tell, but we do not give them more infomation than we think they can handle.
The beautiful upshot was that our amazing daughter stood in front of her whole class at school and said “my daddy has cancer. sometimes i may get upset about it, but if i do, i’m not beibng a drama queen, and you can come and ask me about it”. my heart almost burst when i heard about it.
Our son is too young and involved in his own life and sweets and friends to take much notice, whcih is exactly as we think it should be.
I would agree, tell your children what they need to know. whispering in corners will just make them worry.
x
Hi
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 that roller coaster.
I worry, you’re going to worry. Of course, it’s natural, but in the overall scheme of things worry is wasteful and won’t help so I try to push this away and get practical.
Good luck and come here and rant as much as you need xxxx
Hi
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.
Hi Queen Eve
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.
We’re 2 years 1 month from initial diagnosis and so far have whistled through CTD, SCT and VCD. I’m looking forward to the next set of initials with great anticipation. The question of an allo transplant has arisen againand looking like that’s going to be in the nearer rather than the farther fuure, however, we’re still looking at a future, so for now …onwards and upwards.
Dear Eve,
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 are for Slim.
I know you said you felt it was your fault, but honestly, we are so indoctrinated to believe the men in white coats and authority that it is so hard to question them, even when you’ve had to do it before, you always hope that this one is ok. and the younger doctors think 45 is old – 65 is positively prehistoric!
thank you for posting.
