Dear Maureen and Ian,
Delighted about your outing. Hope Monday goes well. Am living in London -alternating between B&B and hospital. Am about to begin 3rd course of c-Pace. Am weak but fine. I’m responding to treatment. Was even able to met a friend in an Italian restaurant for lunch today. Will possibly have second transplant. By that I mean in…[Read more]

Dear Christine,
I'm so sorry about the disappointing results.
Is it time to research a mini-allo transplant? Full allos have a higher mortality rate. I think that some doctors are not keen and a patient might need to ask lots of questions. I expect they prefer to do a mini-allo on younger and stronger patients. The data from studies can sound…[Read more]

Dear Tom,
I've had to stop wearing contact lenses because of the danger of infection.
I sometimes have to use Chloramphenicol eye drops (antibiotic, not lubricant) or Chloramycetin antibiotic cream- perhaps not spelled correctly. You might need to confirm whether you're having an allergic response to something as well that's affecting your eyes.…[Read more]

Dear Helen,
Good luck with your treatment. I still suggest some lubricating eye drops from an optician to be used a day after Velcade when the eyes can start drying up, lots of moisturiser for your hands, perhaps an antibiotic in the house if you get an infection late at night if your consultant agrees to have one waiting for you. When I was on…[Read more]

Dear Dai,
I wonder whether even if the Rev mightn't appear 'right' for you – if you had some with the Velcade it really might work in a synergistic way. I suppose it might be a question of funding and also of how many side effects you'd develop. Maybe your myeloma needs to attacked along a number of different pathways simultaneously. Sure Velcade…[Read more]

Dear Maureen,

I?m pleased you are making this complaint. Even though myeloma is a difficult one to diagnose, taking a number of very different tests to rule various things out is the only way to respond if the symptoms persist and can?t be explained.

My own very superficial look at how societies evolve suggests that change is more likely to…[Read more]

Hi Tom,
There's a few ways of looking at that. I get some pain during the ten or twelve day gap in between treatment cycles for Bort. Dex. and Cycloph.
I don't know what's causing it and I doubt my onc can tell me because of how individual the illness is.

I've thought about it a lot. Factors at play could be that whenever the dex leaves the…[Read more]

Dear Sue,
I am deeply sorry to hear this news. I hope that the good times you had will give you much consolation.
Eva

Dear Christine,

I didn't have peripheral neuropathy, but I needed infusions of platelets and I had a rough start: left the hospital after the ASCT, essentially needing a nappy, with neutrophils of 0.2, and only able to walk a few steps. After I made the Everest climb to the top flat we lived in in Edinburgh I was well and truly pooped. It's…[Read more]

Congrats on the drop in paraprotein. I've also had problems with my eyes, but perhaps it's a different one as my eyes tend to be very dry.
Eva

Dear Helen,
Just to let you know I'm thinking of you and sorry about what you're going through.
I've done another post on Velcade today you might find interesting.
Best,
Eva

Hi Paul,
I'm on the same treatment. Velcade seems to be very drying: I have to moisturise my hands many times a day and the surface of my eyes requires frequent applications of eye drops like Murine. I drink enormous amounts of water. I've finished my third cycle. There was one day when my eyes stung so much that I had to stay in bed with my…[Read more]

Dear Keith,
I've always followed your journey: I haven't had the privilege of getting to know you, but all my thoughts and love is with you and Sue.
Eva

Dear Tanya,
I too am glad that you father would have felt your love and support.
Eva

Hi Trish,
Velcade is known for making shingles possible, but I don't know about chicken pox. Is Peter on Aciclovr?
As for exhaustion, when I'm on Velcade there are certain days when I fall asleep without much choice, and at odd times. I have some difficulty differentiating between this and perhaps a reaction to the stage of the dex cycle I'm at.…[Read more]

Dear Maureen,
Sp happy things are working are working out. That's a superb response. Sorry about the shingles- I believe it can be very painful.
Thinking of you both,
Eva

Dear Tom,
Am very delighted about your response to PAD. Also enjoying your blog very much.
I understand you feeling nervous – I did too. It's so difficult to generalise about the effects of an ASCT. For most people, the first month is a bit of a write-off, though once home after nineteen days, I was able to read and draw. I got stronger…[Read more]

Hi- I see no reason why an alternative treatment must be started. Many of us have had set-backs and interruptions and then gone on to continue a cycle. After a couple of lots of CDT I had some heavy side-effects with dizziness to the point of temporary unconsciousness. I stopped treatment for about ten days and then began again gradually.
After…[Read more]

Hi- I'm on my third cycle of Velcade. I've tolerated it fairly well- but it hasn't made a big dent in my paraproteins. My consultant was concerned, but my freelites have normalised beautifully. I think I'm a difficult one to track becase I am only secreting abour 5g/L when in full relapse. My original paraprteins were only 14g/L and during my…[Read more]

Maureen,
This is Eva- am in London- can't write properly- am thinking of you, will contact middle next week.