[MothasParticipant]

Hi Tom, crap news why is it always just before xmas eh.

You’ll probably be a candidate for a 2nd SCT as you had such a good response last time round

all the best mate

tom

[MothasParticipant]

I would avoid supplements whilst on treatment. Green tea doesn’t mix with velcade therapies so avoid if you’re in the process of receiving chemo of this type.

My consultant says that curcumin, green tea etc. is probably harmless otherwise as long as you don’t overdo it.

[MothasParticipant]

Oh no.
That’s really sad, Dai was a gentleman and a real support for all of us.
I’m sitting here with tears in my eyes.

I’ve had trouble logging on to the site so haven’t visited for a few weeks. I had no idea that he’d been taken for the worse.

Dai was so full of life, and I mean that in its fullest spiritual sense, that it seems incomprehensible that he’s gone.

My thoughts are with his family and loved ones, he’s in a better place now away from this bloody disease.

tom

[MothasParticipant]

Susan I had a reaction to the Velcade which gave me stye's that didn't seem to clear up for ages. Really persistent.

[MothasParticipant]

No you have your rounds of Velcade, Dex and Adriamycin, then you go on to a transplant.
The PADIMAC trial is about seeing how effect this particular combo is in conjunction with a transplant.

[MothasParticipant]

Thanks to everyone who has replied.
I'm definetly having a few days of niggles, it makes me a bit paranoid.

After the SCT I had a period where I felt nothing at all.
I had a large plasmacytoma in my right scapula and it did quite a lot of damage to the shoulder blade. My arm and shoulder gets very stiff.

I've also have the odd area on my lower back and rib cage which ping a bit at times too, especially if I'm tired or have been overdoing it at work.

Thanks again

Tom

[MothasParticipant]

Terry it's at the royal college of physicians, London.
I'm sure you can still get a ticket.

Would be great to meet some of you there.

[MothasParticipant]

Terry I have tinnitus and I'm sure I got it as a side effect of the Velcade cycles I had at the beginning of the year. Like you it comes and goes. If I'm tired or a bit stressed it's worse.

I did a little bit of research and found out that some people see it as a form of neuropathy. I'm pretty much resigned to having it now, it's the least of my worries really 😀

[MothasParticipant]

I would like to draw people's attention to these excellent guides by macmillan

[b]Legislation the equality act and cancer:[/b]

http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Campaigns/Working_through_cancer/WorkingThroughCancer2010/EqualityAct2010.pdf

Work it out: the essential questions to ask for staff
http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/WorkingThroughCancer/WorkItOut/WorkItOut.pdf

You are legally protected under the equality act and your employer has to behave reasonably to you.

In addition there is a whole section on the Macmillan site about work related issues. Very useful.

http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Workandcancer/Supportforemployees/Workcancer/Workcancer.aspx

[MothasParticipant]

Yes your best bet is to ring the nurse and have as many details of tests results and symptoms as possible because any treatment will be taylored to those.

[MothasParticipant]

David, I can't help on the age side of things as I'm only 47 but I've just had an SCT at UCLH and you are in the best of care. Perhaps I'll bump into you at clinic some time.

tom

[MothasParticipant]

Kim I think it depends on how good your insurance is. If it's extensive and will keeps subsidising the treatment in a way you can afford, then you might be better of staying in the states. You may want to factor in access to good specialists too. Is there a specialist myeloma clinic in or near Houston you use?

We're generally around 2 years behind in terms of the new treatments. As we know, that can be a long time for an MM patient.

[MothasParticipant]

Nobody really knows as there hasn't really been enough research.
I wouldn't take it whilst undergoing treatment or soon afterwards but it probably wont do you any harm. Whether it'll do you any good is anyone's guess though >:-)

[MothasParticipant]

http://www.oncologynurseadvisor.com/turmeric-spice-may-have-role-in-multiple-myeloma-therapy/article/312455/#

Delicia Honen Yard
September 20, 2013
[b]Turmeric spice may have role in multiple myeloma therapy[/b]

Hybrid compounds formed from structural features of the antinausea agent thalidomide and curcumin, an active ingredient in the common kitchen spice turmeric, destroyed multiple myeloma cells in recent lab experiments.

A team led by Shijun Zhang of the Virginia Commonwealth University (VCU) School of Pharmacy in Richmond, Virginia, designed the hybrid molecules. According to information in a VCU statement accompanying the release of the findings in Organic & Biomolecular Chemistry (2013;11[29]:4757-4763), laboratory studies have shown that curcumin inhibits the formation of cancer-causing enzymes in rodents. Thalidomide was reintroduced into use in the late 1990s as a treatment for multiple myeloma, after being taken off the market in 1962 because it was found to cause birth defects.

Zhang noted in the VCU statement that thalidomide disturbs the microenvironment of tumor cells in bone marrow but that the drug disintegrates in the body. Curcumin is limited in its anticancer activity by its poor water solubility. However, “The combination of thalidomide and curcumin in the hybrid molecules enhances both the cytotoxicity and solubility,” explained Zhang.

The hybrid compounds exhibited lethal effects on cell models of human multiple myeloma, and the combination of curcumin and thalidomide was significantly more potent than either agent alone. The investigators concluded that the curcumin-and-thalidomide hybrid should be studied further as a treatment for multiple myeloma.

[MothasParticipant]

Thanks Carol didn't know that.

[Author]

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