Hi Charlotte
I can understand your frustration. My numbers were also low on diagnosis and I had a good result after 4 cycles of CDT. However the consultant insisted that I complete 6 cycles as that was the protocol. It is annoying that they just follow protocol when your body is being pumped full of poison. However I complied….well mostly as…[Read more]

Hi Tina
We all fear this same situation of early relapse so I think it is difficult for us to deal with another’s relapse. I guess you just have yo be there as a friend and listen to her fears. Many people suggest counselling and maybe that could be something that would help. I know if I were in the same situation I would be very anxious. Every…[Read more]

Hi Keith
I guess because my paraprotein was quite low but my lambda light chains were raised they were mentioned at diagnosis. I had the standard initial treatment with CDT and while my paraprotein dropped quickly, my lambda light chains were slower and immediately started rising when CDT finished and I was waiting for transplant. Even now while…[Read more]

Hi
It is common now in the US for patients to go through the transplant as outpatients. The doctors should be checking your mum’s blood every day and after 5 or 6 days her neutrophils will fall to zero which is when she is at great risk of infection. A few days later if the stem cells are working her neutrophils will rise and she will start to…[Read more]

Hi Katy
I was lucky my collarbone collapsed as it gave me an early diagnosis. In fact without the bone damage I would have just been on watch and wait. My paraprotein was 10 but rose to 18.4 as I delayed initial chemo treatment while undergoing radiotherapy of my collarbone. I have iga lambda myeloma and my lambda light chains were 526 (5.7 to…[Read more]

Hi Keith
Yes still on tests in Oz and monthly parmidronate. Just been moved to 6 weekly checks (next one on Thursday) but hoping to go to 3 monthly as I want to spend at least 3 months travelling in Europe this year if still in remission. If all clear next week then booking a cruise to Fiji, New Guinea or New Zealand….depending on…[Read more]

Katy I was 63 at diagnosis and like Keith, less than a year later had had my transplant in London and am approaching my first year in complete remission next week. I am back home in Australia, living life to the full so please don’t despair for your mum. The specialist in London told me to think of myeloma more as a chronic disease nowadays,…[Read more]

I blame all new symptoms on the treatment, cos then I don’t have to admit maybe it is to do with growing older…..65 now!

Carol

I know in America they use revlimid for maintenance but not thalidomide. I had thalidomide for my initial therapy and it worked, but left me with neuropathy. Also, as it is a sedative take it about an hour before bedtime. Are they offering it to you because you are not in complete remission? I was never offered any maintenance while in a…[Read more]

Not whistling but tinnitus in one ear and my hearing has definitely got worse.

Carol

Hi Phil
This reply may be too late for you but I had etoposide at Hammersmith Hospital London before my stem cell collection. I am now almost 1 year in stringent complete remission so the etoposide was successful for me. The etoposide made me neutropenic as expected but I don’t remember any more serious side effects although I did lose patches…[Read more]

Hi

Black Swan

Another collarbone diagnosis, the only one I have heard of apart from mine! My collarbone too just went as I was alighting from a bath, although I must admit it had been a bit sore for about 3 months. In A&E they also wanted to send me home with a sling for 6 weeks as the X-ray didn’t actually show a break. However I had a huge…[Read more]

Hi Emma

Hi Emma

3 months after SCT I was able to return to work (inner London high school…NOT classroom based) on a phased return with the expectation stated clearly by the Head that I was to be full time (6 1/2 hours daily) within 6 weeks. Fortunately I was able to manage that within the time scale. Through the initial treatment I was off…[Read more]

Robert and Martin may you both smoulder for a long time cos treatment can be quite debilitating. I am now just past 7 months after stem cell transplant and in complete remission. People on here talk of the “new normal” and I am certainly not back to how I was before diagnosis. So, do whatever you can to smoulder for as long as possible would be…[Read more]

Thanks Richard

Yes my agent assures me all will be well. I will just leave him with the keys in case this existing offer doesn’t eventuate and the property needs to be re- marketed. I can’t wait to be back home with friends and family and swimming in the gorgeous blue Pacific Ocean at Surfer’s Paradise, Queensland where I will live. I have read…[Read more]

What a fantastic result!

Carol

Hi Eve

So sad about Slim and I repeat you are an amazing woman the way you carried out Slim’s wishes-no doubt at great cost to your own health. I am finally returning to Australia even though I still have no contract for this London flat after more than 5 months! I cannot sit here any longer when all I want is to be back with my family.

I do…[Read more]

Hi Michelle and Finn

I finally got to see a haemotology consultant at the hospital (last time the GP could only do a phone consultation and prescribed a decongestant!) However despite no temperature the consultant has prescribed me 2 more antibiotics for 10 days! At first I wasn’t going to take them, but thank you Finn for your reply, as you…[Read more]

Hi Rebecca

I have been told to take those prophylactic antibiotics for 12 months. Septrim is to prevent pneumonia apparently. Last blood test 2 weeks ago my neutrophils were 1.6. Not sure if they were affected by the cough I am still battling.

Carol