Newbie. Anyone dealing with Amyloidosis/velcade treatment?

Hi Noone001 and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various blood cancer groups.

I don’t have Myeloma but I have been on a 22 year journey with a completely different rare blood cancer but just wanted to drop in past and help as best as I can.

We have a site search  tool near the top so if you put the words amyloidosis, Velcade and bortezomid into separate searches then select ‘Anywhere’ you will pick up all the older posts…… and having had a quick look there are a few.

As always you can hit reply to any of the old posts and see if the members are still active on the site.

We have various support available through the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

You may also find our Cancer Nurse Team in our Ask an Expert section helpful but do allow a few working days for a reply.

Talking to people face to face when on a cancer journey (patient or family) can be very helpful but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up.

Do also check out for a local Maggie's Centre in your area as these folks are amazing and provide support for all the family. The centres also have monthly Heamatology Support groups.

Always around if you need further help in navigating the community or just to chat.

All the very best ((hugs))

Thank you. I’ll try the search, that’s really helpful. 

Hi,I've recently started my treatment for myeloma. I'm being given velcade along with steroids.i find for 3/4 days afterwards I have headaches, flushed cheeks, indigestion with hiccups and don't sleep very much. I must say it's not as bad as it sounds and everyone reacts differently. I wish you both well on this scary journey.... John

Thank you. That’s good to know it’s not awful for some at least. 
Wishing you well too. 

Hello Noone001,

I have multiple Myeloma and as part of my chemotherapy treatment, I had Velcade ( self administered by injection twice a week ) Dextamethasone ( steroid tablets ) Thalidomide tablets.

The steroids increased my appetite, but unfortunately caused constipation. It was a struggle, but I eventually found a balance with laxatives.  I had awful mood swings caused by the steroids, but my very patient wife kept me calm and grounded.

I was very tired and needed a nap in the day as well as sleeping for 9-10 hours every night.

The drugs caused Peripheral Neuropathy,  this is when the nerves in hands and feet are damaged, symptoms are tingling, pain, cold feeling, also not able to feel heat sometimes. E.G. can't feel hot water in Bath, so be careful. 

Sorry if it sounds all doom and gloom, I deal with it, no option but to.

I am 71, was fit and healthy, a year after chemotherapy,  I am back to about 8 out of 10.

Obviously different people have different reactions to the drugs, so deal with it day by day. Speak to doctors, nurses etc to get the gest information.

Speak to your GP about side effects.

Good luck and warmest wishes.