Hi Ali
If all bloods are all ok this is a good thing, means the bone marrow is functioning properly and saves starting on the treatment route just yet. The treatments have to be kept in reserve for as long as possible as individually we don’t know how quickly we will work our way through them all, but the plasmacytoma needs fixing so close review…[Read more]

Hi Izzie
Good luck with the transplant, hope you have an easy ride. Keep drinking as much as possible!
The zometa is usually stopped for a few months over the transplant time, I restarted mine at the 3 month mark on the myeloma xi trial.
Love Helen

Hi Jan
The mystery of the myeloma numbers! Long may yours stay down. I went back for more to be taken today and have my fingers firmly crossed.
Hi Stanley
Welcome from me and thank you. I hope you sail through the treatment and get many years of event free time. Try not to worry about tomorrow, just get the most out of every day.
Hi Andy
Sorry…[Read more]

Thanks Andy, David and Tom,

Andy and Ceri’s experiences seem to sum  a lot about myeloma treatment, in that something that doesn’t work for one person can be so successful in another. It’s really helpful to hear about what you’ve experienced.

My husband seems to be doing ok at the moment. He’s coming up to the end of the second full day of…[Read more]

Hi  Susie,

It’s there if you click the Information tab, look to the right-hand column and then click Myeloma UK publications list. You’ll find it near the bottom of the list and you can download it.

Hope you find it.

Sarah

We got the phone call at lunchtime today asking M to be at the hospital as soon as possible. He’s started chemo this evening and won’t be moving far as he’s got two lines in one arm and one in the other. The infusions run for 24 hours and the nurses will check every couple of hours, so he’s going to get very tired, I think. He’s also on a very…[Read more]

Hi Lois

I think it’s a great idea about providing a book with hints and tips on living with myeloma. I don’t know how you are going to organise so many different comments from all of us, but perhaps you might consider placing the suggestions under various headings such as coping with myeloma, first line treatment, stem cell transplants,…[Read more]

Hi Helen

I think you have coped so well continuing to work whilst going through a second round of treatment, especially with the various side effects which you have suffered. It must be so difficult balancing your work, family and myeloma treatment. Hopefully occupational health will come up with a good retirement package for you to consider…[Read more]

Dear Rebecca
Thank you, ‘the messing with ones head is a serious problem’ and I consider myself relatively lucky in this direction! I have been angry a lot of the time! I find that the inability to plan more than 4 weeks ahead crucifying sometimes, and I get very jealous of people who book things or send me invitations that are years away!
Also…[Read more]

Thanks Rebecca, Maureen and Megan,

The bottle of red is being enjoyed – I get it all to myself as M doesn’t drink (and it wouldn’t make a good combination with the morphine!).

Rebecca – I’ve been reading and in America they sometimes add Velcade to DT-PACE – maybe M is being let off lightly?!

It’s a bonus to have sunshine this weekend. We…[Read more]

Hi Helen

I’m really sorry to read that you have relapsed. Have your light chains jumped considerably, or are they slowly climbing upwards? You must be so worried and anxious about starting another treatment. It’s such a shame that you couldn’t have a longer period of remission for your body to recover before you start more drugs. Do you think…[Read more]

Maureen,

It’s so good to hear of Ian’s progress. It must be such a relief to see him getting more mobile and doing so well.

I do try to take one day at a time. Work makes that difficult, but I do my best! We’ll enjoy the next few quiet days and I hope you do too.

Sarah x

Hi Maureen
Thanks.
I have no idea! I was one of the unfortunates that got huge problems with the SCT that I think they are a bit reluctant to jump in again, my numbers also started rising slowly only 14 months in, so not a brilliant response. They say they will go for it again if needed though.
I think it will be pomalidomide but I haven’t had…[Read more]

The best-laid plans and all that …

He’s home again tonight having had BMB and picc line fitted. There’s a problem getting the chemo drugs – something to do with one of them beimg unstable and only lasting 24 hours and the bank holiday weekend being imminent. So now it will probably be Tues or Weds next week before M actually starts the chemo.…[Read more]

Congratulations Ellen to you and all the team. A well deserved award

Regards Jean

Thanks Rebecca and Maureen,

We’re hoping that this aggressive treatment will send things in the right direction. It’s reassuring that M now knows most of the staff on the ward and he even has the same room as he had for two weeks in January. He’s booked in for BMB tomorrow morning with the nice registrar who talks about football with him. I’ve…[Read more]

Really good start with the Velcade, Maureen.

M’s consultant said that a good initial drop was a good sign. Let’s hope it keeps going in the right direction.

Sarah