Hi Keith,

You have been here before and you keep on fighting back.

The transfusions are a necessary inconvenience but if they lift you away from having to postpone treatment it will be worth it. It's good to see your Neuts are staying stable, that's one big plus. The medics are doing all they can to get you fit enough to allow the CDT its…[Read more]

Same here… whenever I am on treatment (which has always included Dex) my voice goes husky and breaks a lot, which doesn't help when I want to record vocals (singer/songwriter as a serious hobby).:-(

Dex is the only constant of these occurrences so I have laid the blame at its door (poor thing, it does get a bad press when all it is trying…[Read more]

Hi Lisa,

Your husband will soon get used to judging his own temperature (i.e. he will feel it if his temperature starts rising) but it is sensible to take his temp a couple of times a day (mid-morning and mid-evening) especially if something like a chest infection is lingering.:-|

I check my temperature at least once a day as a ritual……[Read more]

Hi Keith,

Well so far so good, even if it is very early days. Your Nuets are holding.perhaps building and the rise in your HGB is good news too. 🙂

I do hope that the CDT helps to get you back on track and as long as your bloods hold out you could go several cycles, perhaps reaching remission or a healthy plateau. I know that being on…[Read more]

[quote]It's strange to think that when Patrick was having Bendamustine treatment 2 years ago it was not very well thought of. In fact I remember suggesting it to one of our gang and she said that her Doctor had told her that it was a waste of time. [/quote]

Hi Tina,

That was also my original impression based on information and opinion of a…[Read more]

Hi Maureen,

I am sorry that Ian is not responding to his treatment as quickly as you and the medics might wish. His anxiety seems to be holding him back and I know from experience, as do many on this board, that hospital is hardly the place to raise his spirits… home is the only place to give him a real chance of that, Being positive,…[Read more]

Hi Terry,

Our paths and treatments have followed very closely, Velcade was also magic for me (not the process, old school cannula not the new subcut unfortunately) but the MM came back within weeks of finishing treatment despite reaching total remission. 🙁

I have one rest week left before starting C2… getting a little better and…[Read more]

Hi Tina & Etta,

I hope you both enjoy a long and trouble free remission. It is so good to see/hear good news on the board… keep in touch now and again to let us know how you are getting on. 🙂

Regards and best wishes

Dai.

Hi Maureen,

I did very well on Velcade, reaching complete remission after 6 Cycles. I had to have a cannula for each infusion but it is much better these days with a quick and painless injection into the stomach… as with Jo.:-)

I relapsed quickly after reading full remission and I would have done better to have carried on to the full 8…[Read more]

Hi Gill,

Sue;s last reply was on the 4th January… 8 days ago. 😐

I hope she is coping… I am sure she would let us know if there were any developments. Perhaps the DN's have arranged a few days hospice respite and she has managed to get away for a few days – wishful thinking but that would be good. 🙂

Much love 🙂

Dai.

Hi Wendy,

Like the others I am hoping that this is a blip and your next readings are back to 19 or below.:-)

I am Bence Jones too and my treatment post relapse usually started at approximately 400 light chains. Velcade to Revlimid was 425 due to waiting to go on a trial that I just missed out on and Revlimid to Bendamustine started at…[Read more]

Hi Liz & Kev,

From what you have said here and elsewhere it certainly looks as if the medics haven't managed to get on top of the original infection… with different shades of it reappearing and causing these repetitions which are both worrying and inconvenient to say the least.:-P

I have been suffering with C: difficult, a particularly…[Read more]

Hi Keith,

I don't know where to start really…

Yes, you, we, have to press on and try to stay positive while ever the medics offer treatments… CDT may well provide a good bit of breathing space… it worked miracles for me first time round.

I realise the implications of your consultants remarks about your bone marrow but it may well…[Read more]

Hi Keith,

I see that you are in tomorrow for bloods, so I'll reserve judgements or advices until you post the results. It seems very early for Bendamustine to Bomb so like the others I'm hoping for a blip. Like Eve says, the consultant is being honest and has put a couple of alternatives on the table. CDT worked miracles for me as a…[Read more]

Hi Keith,

I had my second infusion of Cycle 1 on Monday (infusions on days 1&8) and apart from feeling tired and a little stiff and sore from all the sitting around I am not too bad… but it's early days and I am keeping an eye out for any side-effects that may creep up on the blind side. I still have my appetite and my C: Diff seems to be…[Read more]

Hi Susannah,

I have followed Michael's progress through your posts on various threads and I hope that by now they have found a pain management regime to give him complete freedom from all but the slightest of aches and pains… he deserves that with bells on. 🙂

What is the state of his MM? Are the hospital still measuring?

Lastly, how…[Read more]

Hi Sal,

I hope that the medics get your Dad's (Name?) Kidney function up and running PDQ (I am aware of his age but Kidneys usually respond well).

Regarding the crushed vertebrae, radiotherapy can bring about almost magical results as reported by several people on the board. I had two crushed vertebrae, with one being forced against my…[Read more]

Hi Scott,

I too will be enduring the joys of Bendamustine on Monday next… I shall think of you as they struggle to find a vein. 😉

We have a free drinks and sandwiches trolley which makes its rounds of the Day Case Unit between 12 and 2 PM – so that, literally, caters for the eating problem. 😎 The same trolley glides around dispensing…[Read more]

Hi Rosie,

[quote][i]I have to say that the main side effect for me was how tired and weary it made me feel. A bit of nausea but nothing that the tabs couldn't sort.

No sickness but I did have to reduce the dose of Thalidomide as that did cause me more face/lips tingling and 'clumsy fingers'. I had the same during CDT so I don't associate…[Read more]

Hi Badger, Eva, Vicki, Tom, Elaine, & Eve.

Thank you for your messages of support, they are truly appreciated. 😀

I will keep you in touch as the treatment commences, especially regarding the processes, procedures and side-effects… they may come in handy in the future, although I hope, truly and deeply that that need is a long, long way…[Read more]