Hi Mary

I take curcumin capsules that I bought over the internet from Cytoplan. When I checked with the consultant he was fine with it, said something like “Well if I have patients I cannot cure, why would I object to them taking something alternative?” Not sure how effective they are, but there seems to be some research showing they work. I…[Read more]

Hi

The only issue I had with collection (mine was done with etoposide not cyclophosphamide) was pain from the Neupogen shots. It was so bad I even had to take painkillers which I never normally need. But…..they say no pain, no gain and I gave them 15 million cells per kg after 4 hours on the machine. They did insert a Hickman line prior to…[Read more]

Hi Wifeof?

I was discharged on day 15, but luckily came through the SCT with no infections or other complications. I was also told to expect 4 weeks incarceration! Thank goodness that didn’t happen.

Carol

Hi Nicki

Yes I had the dreaded biopsy at day 100….bloody painful too as she went in 3 times after adding more local anaesthetic…..ouch! The biopsy previously before collection was a breeze….different doctor! So the biopsy showed less than 1% cells which confirmed the blood test results. Had another blood test last Friday (today it is…[Read more]

Hi

I was also really ill by the last cycle of CTD…in fact those drugs made me sicker than the melphalan in the SCT. I was dizzy, weak and breathless but didn’t have fluid retention. I did develop tachycardia (rapid heart beat) but that has now settled finally. Tomorrow it will be 5 months since my SCT. I have been back at work for 2 months…[Read more]

Wow he has done really well. I still think the SCT is like giving birth….you ignore the horror stories and approach it positively hoping for the best. I am almost 5 months post transplant….blood test today, so hopefully results will still be good when I get them next week. I was in stringent complete remission at day 100 post transplant,…[Read more]

Thanks Mavis

I stil have a bit of a rash….may be from the sun? I think I read you should be more careful in the sun after chemo. As I am planning to spend lots of time on the beach when I return to Australia, avoiding the sun will be a problem.

Carol

Well done Keith! I am in stringent complete remission too after my transplant in January….paraprotein undetectable, zero cells in biopsy and normal light chain ratio. But….like you it is still fingers crossed that I stay in remission, unlike after the CDT when my numbers started rising after 3 weeks! Guess the melphalan is a tad stronger…[Read more]

Mavis, I think it is the opposite…the chicken pox virus stays in your system and later presents as shingles. I think that if you have never had chicken pox (like me) you can even catch chicken pox from close contact with someone with shingles.

Carol

Hi

Many times people on this and other forums suggest getting another opinion and from what you have written, I think you definitely need to be referred elsewhere. I don’t understand how your dad has new broken bones if he is currently undergoing treatment. As you have seen
there are many treatment options available, with some people being on a…[Read more]

David…what fabulous news!

Carol

Hi Jane

This is so sad to read. It is frightening how often I read about the late diagnosis of myeloma. As it is a very rare cancer, GP’s may only see 1 or 2 cases in their lifetime. So often it is only after a trip to emergency with an unexplained fracture or kidney collapse that the diagnosis is made. For myself a blood test in February…[Read more]

Well said Eve…thinking of you and Slim with your new challenges….sending positive vibes your way.

Carol

Hi Nick
I don’t know about your experience, but I never felt unwelcome when I was a newcomer. I am still a relative newbie really, as it is only 14 months since the myeloma gremlins ate my collarbone.

Carol

I gave up posting too as the site wouldn’t allow me to sign in, but today hey presto it worked! I am afraid I am forthright too (unfortunately I think it is an Australian trait and often gets me into trouble) like Eve but surely in an open forum it should be for everyone to express their fears, views and thoughts openly. Otherwise why have a…[Read more]

Yeah! Finally the website allowed me to sign in. I gave up trying about 6 weeks ago. Not everyone gets an infection or sepsis. The consultant told me I definitely would as “everyone does” but I didn’t. I did have a temperature spike when my neutrophils were low and they hit me with IV antibiotics which I didn’t want but dared not refuse.…[Read more]

Hi Michelle

Are you in the UK? If so, you are lucky to be offered Velcade as a first line treatment. Most of us on the forum could only get CDT (cyclophosphamide, dexamethasone and thalidomide) initially, unless we signed up for a trial. I was also shocked by my diagnosis. Although I was 63 years old, I don’t think anyone my age was fitter or…[Read more]

Hi

Jump up and down and shout loudly! I am 13 weeks post transplant and your wife’s behaviour is certainly unusual from my experience. You need to check what drugs they are giving her. Every time they brought me tablets or wanted to put medication through the drip, I asked them what they were and why they were giving them to me. There was no…[Read more]

Hi Tina

I am 13 weeks post transplant and while feeling better week by week, I am still very tired…..always need my afternoon siesta. Am eating well and walking more each day…went back to work just before the Easter school holidays on a phased return, so slowly life is resuming. I have my biopsy on the 29th of this month at the 100 day…[Read more]