Hi Vicki,

Fingers crossed it will be a slow relapse. It is hard to stop worrying but you just have to take it a day at a time. It is a good sign that Colin is feeling well and that the blood results are good. We found out in December that Phil’s pp had been rising for five months and we were sure he would be on treatment by February. Here it…[Read more]

Hi James,

I was unable to attend my husband Phil’s last appointment with the consultant and Phil asked if the doctor would mind if he taped the converstaion as normally with both of us there one of us will remember what the other one forgets. The doctor did not mind at all so it may be worth asking. Phil used a device on his phone to record the…[Read more]

That is brilliant news Keith, long may it continue 🙂

Megan

Hi Vicki,

Sorry to hear this news and I hope the next appointment in 6 weeks brings better news. It is hard to come to terms with the numbers going up when you spent so long waiting for them to go down :-(.

I know from what I have read that light chains are more volatile than pp numbers and they can go up and down depending on infections and…[Read more]

Dear David,

That is wonderful news, long may the excellent remission continue 🙂

Thank you for sharing as it gives me hope that Phil’s next line of treatment may give him this type of result.

Good luck on the 7th.

Megan

Hi Maureen,

I can’t help too much as my husband Phil’s MM is monitored by paraproteins but two months ago his Lambda Light Chains went up to 13.9 which threw the ratio out of normal range. I know these are tiny values but his consultant said it was probably just a blip as Phil actually has Kappa Light Chain Myeloma (although after the first…[Read more]

Hi Sharron,

Welcome to the forum, sorry you have had to join us, especially with such a complicated diagnosis. I know from experience of my husband Phil’s diagnosis of MM how complicated it can be to explain to people so I can only imagine the difficulties you have explaining LCDD.

My husband was diagnosed at the age of 43 and had his SCT at…[Read more]

Hi Sarah,

I am glad to hear the DT Pace went smoothly but so sorry to hear M’s temperature spiked and he had to be admitted again. It sounds very scary and I do know what you mean about the parking. When Phil’s temperature spiked we got a cab to the hospital and I think the cab driver was terrified when he realised how unwell Phil was so he…[Read more]

Hi Angela,

Good luck to you and Alex for your run and thank you for helping to raise money for Myeloma UK. I hope the bone marrow biopsy on Tuesday brings good news.

Megan

Congratulations, definitely well deserved.

Megan

Sarah,

I hope you are both enjoying the long weekend and that the DTPACE helps get the Myeloma down to a level that will allow M to have the SCT.

Megan

Hello Helen,

Sorry to read about your relapse, I hope the next treatment has few side effects, works well and gives you a longer remission.

Megan

Hi Sara,

I can’t really help with most of your questions as my husband Phil was diagnosed with Myeloma not MGUS or SM. Phil has bone pain from the damage caused by Myeloma and this has not gone away completely after treatment so he has ongoing pain but one of the things the doctors are tracking to help decide when treatment is needed again is…[Read more]

Hi Keith,

It is my husband Phil who has Myeloma and he also has trouble getting a full nights sleep due to the neuropathy he has in his feet from the Velcade he had as his initial treatment. He finds wearing socks to bed helps a bit. Also massaging the feet and legs with cocoa butter can help.

It may also be that your body is still recovering…[Read more]

Hi Stuart,

This is my test post from my blackberry.

Thanks,
Megan

Hello MM,

I agree with Rebecca, my understanding is VGPR is measured from diagnosis. My husband Phil took part in the PADIMAC trial which was looking at delaying the SCT if a VGPR (90% reduction) was achieved after treatment of velcade-dox-dex. In Phil’s case his pp was 32 at diagnosis and was down to 5 after the stem cell harvest, as this was…[Read more]

Hello,

David – thank you for asking this question and thank you to Rebecca and Helen for your helpful replies.

Phil is slowly relapsing for the first time and at his clinic appointment today light chains were mentioned for the first time ever. Since his diagnosis we have only ever been told about the PP numbers. I knew I had read this thread…[Read more]

Hi Carol,

Congratulations of your great results at day 42 🙂

As with everything MM related it seems to depend on the individual hospitals and doctors. My husband Phil has Zometa and he never stopped having it. The day he was admitted for his SCT he had his monthly Zometa and this has carried on monthly with no break since his SCT which was…[Read more]

Thanks Vicki,

We had a shock in December when we found out Phil’s PP had been rising since August but we are getting used(?) to it now. We were told in July 2013 it was at zero and we had just assumed it was still there but it turns out Phil only maintained the zero for one month! At the moment he is still on a watch and wait plan, he has a…[Read more]

Hi Laura,

Welcome to the forum, I am glad to read that you are recovering well from your SCT. My husband Phil was diagnosed with MM at the age of 43 in May 2012. His first line of treatment was on the PADIMAC trial which was to see if the use of Velcade could delay the need for a SCT. In Phil’s case his response to Velcade was not good enough…[Read more]