Hi

It seems the standard treatment in the UK is 6 cycles at least. I had no paraprotein detectable after 3 cycles, but my light chain ratio was still abnormal, so had to complete the 6 cycles. Do you know your husband’s light chain readings? Even then the ratio never got to normal, but I had the transplant anyway. Bone marrow biopsy showed 4%…[Read more]

Hi John
Best of luck with the transplant. Rebecca is right about your wife finding it difficult. I had such good care from the staff at Hammersmith Hospital that I only asked my husband to come to visit every 2 or 3 days. It upset him to see me ill and I found it easier to manage the few days of nausea etc without having to worry about him as…[Read more]

Hi Rebecca
I don’t understand why I didn’t lose all my hair with the melphalan….it seems everyone else does. I could have just kept what I had left! Maybe I should shave off the stubble to encourage new growth? Maybe the stubble is so damaged from the melphalan it can’t grow? I am starting to get worried…I don’t want to be hairless…[Read more]

Hi Dick

Don’t lose hope yet from the transplant. I have read of people on this forum whose pp continued to drop many months after the transplant. As Eve says you have youth and fitness on your side. Remember you are only a few months post transplant so REST! I have an offer on this London flat so am planning my escape to Australia, but…[Read more]

Hi Dick

I was wondering why they sent you to SCT with a paraprotein of 32? Did you have Velcade for first line of treatment or CDT?

Carol

Hi
Yes I have black floaters in one eye. Thy developed when I was on the initial treatment of CDT. I have just been to the optometrist, but she didn’t really want to blame the drugs, just said many people develop them and more so with age (I am 64). I certainly did not have any before I started with the drugs. The floaters are REALLY annoying,…[Read more]

Hi Keith
I too felt quite OK after the collection, even returning to work for a couple of weeks while waiting for the transplant. Enjoy it while you can cos it takes quie a while to feel OK after transplant.

Carol

Hi Rebecca

I didn’t lose weight either even though I was unable to eat for several days. I need to exercise more but just cannot motivate myself. Returning to work next week on a phased return (1 hour a day or first week I hope) so will be more active then.

Carol

Hi Keith
Well done on your collection! It is a relief to have it over and done with in 1 day. Best of luck for the transplant. Hope you have smooth sailing throughout.

Carol

Hi Jean
What a fighter your Michael must be! Do hope he is out of critical care and making progress. Infections are a constant source of worry for all of us.

Carol

Well done David. You are such a good support for many on this forum and so deserve a long and healthy remission. I am 8 weeks post transplant and blood test at 4 weeks showed no paraprotein and normal light chain ratio….let’s hope it stays that way. I have an offer on my flat and am excitedly planning my return to Autralia….can’t wait to…[Read more]

Hi Keith

I am 8 weeks post transplant and empathise with you about the side effect of CTD and the pain from the GCSF injections. At the end of 6 cycles of CDT I could barely function, but things did improve over time. I had terrible pain for a day or two from the injections and like you they became more and more difficult to do as time went on,…[Read more]

Hi John

I must say I was lucky not having any vertebrae or kidney problems….but the myeloma gremlins did eat my collarbone, which is how I was diagnosed when it fractured as I alighted from the bath….nearly 1 year ago now. I do have some neuropathy in my toes from the thalidomide, but can still walk short distances OK -thank goodness. I…[Read more]

Hi John

I am 8 weeks post transplant. I had a Hickman line put in before the stem cell collection and that was used for the chemo and the stem cells, plus the daily blood tests and blood transfusions, platelets and antibiotics you get given through the treatment.The high dose chemo I had at Hammersmith Hospital London was melphalan which I think…[Read more]

Molly
I am in London and the care I have received from the NHS over the last year has been AMAZING!

Carol

Young Tom

I am so pleased for you…it is lovely hearing successful stories. I have managed to sell my unit in London after 9 days on the market and am planning a return to Australia in July. I am hoping to get ill health retirement…not sure how that will go? I do not really know what awaits me as far as treatment goes when I relapse back in…[Read more]

Hi young Tom….long time since you posted…things must be going well for you. From memory I think you were on the PADI clinical trial at University Hospital, which is why you were able to access Velcade as initial treatment. I did ask my consultant at Ealing to refer me for that trial, but he convinced me that CDT was effective and to save…[Read more]

Hi Mike

Even in Australia Velcade is now available as an up front treatment, but here in the UK we are still limited to the old regime of CDT..cyclophosphamide, dexamethasone and thalidomide. In my case, while CDT worked to bring down my paraprotein I never achieved a normal light chain ratio. Would that have been different with Velcade…who…[Read more]

Hi Richard
I haven’t had to go through the assessment as luckily I applied before the change to PIP. Even so I had to appeal their first decision which was to award me the lowest rate of DLA. After my appeal they changed it to a higher rate. I know there has been huge dissatisfaction with the assessments and I think I heard that ATOS are giving…[Read more]