Hello Kay,

Welcome to the site but sorry you have had to join us. The positive thing is you are being monitored and your doctors will being keeping an eye on your blood results and any new symptoms, make sure you tell them about the pain in your sternum.

How to avoid ulcers from the worry is something I am still trying to work out myself :-).…[Read more]

Hi Nicki,

Welcome to you and Kevin. My husband Phil was on the PADIMAC trial at Bart’s. His paraprotein did not reduce enough to delay the SCT so he had his transplant after he completed the six cycles of the dex-dox-Velcade. The trial was looking at delaying the SCT if the initial treatment decreased the pp or light chains by 90%. I know of…[Read more]

That is wonderful news David 🙂

Megan

Hi Sarah,

One last suggestion after reading your response. I know it is not available everywhere but have you checked if M could have patient transport? When Phil had both femurs operated on he could not travel on public transport and driving to the hospital was not an option. Phil was able to get patient transport to and from his…[Read more]

Hi Sarah,

It is a difficult balancing act but you are right not to rush into any decisions. Do you have people who live near by who can help? The reason I ask is that M may need a lot of help at the moment but as the treatment gets the Myeloma under control he may be able to do more without your help. If there are family or friends who can…[Read more]

Hi Andy,

Well done Steph for catching it quick. Hopefully your pomalidomide will not be delayed for too long, will they wait until your neutrophils recover a bit more before starting it again?

Phil is battling a bug at the moment as well, he has been given penicillin and his temperature has been behaving itself so no need for a hospital stay…[Read more]

Hi Mary,

Sorry to hear Charlie collapsed, I hope the chest infection is on the way out by now.

We live in London so I can’t offer any help on your choice of hospital but I hope the move into the new house goes smoothly.

Megan

Dearest San,

I am so sorry to read this sad news. Phil and I are thinking of you and your family.

Megan

Hi Tom,

Nothing seems to help Phil’s neuropathy but it is mostly just annoying, not painful too often luckily. Hopefully you can avoid it but if it does start get them to prescribe you something to help as soon as possible, I think if it can be controlled/stopped early on it is more likely to go away. If you need/want any info in the future…[Read more]

Hi Carol,

When my husband Phil had his Melphalan he chewed on ice chips before and during the chemo. We got the ice from the ice machine in the ward kitchen. Phil also used the mouth wash provided during his stay in hospital and when he got home. He had no mouth ulcers.

Good luck and keep us posted.

Megan

Hi Tom,

Good luck with the new treatment :-). Velcade worked well for Phil but he has ended up with peripheral neuropathy in his feet so do keep your consultant informed about any pins and needles or tingling in your fingers or toes. Other than that Phil had very few side effects and his Velcade was given more often so you may find neuropathy is…[Read more]

Hi Sarah,

Phil was never told he had to avoid any foods while on treatment but we did (and still do) make sure everything was thoroughly washed and/or well cooked.

I have a bottle of hand gel in each of the main rooms of our house but we never asked visitors to use it specifically, only if people stayed with us would I ask that they used it in…[Read more]

Hi John,

Although my husband Phil had six cycles of velcade he never had any seizures so I am sorry I can not help with any of your questions. You could try ringing Ellen or Maggie on the infoline as they may know more about possible MM/velcade related causes for seizures, if there are any.

I hope it was just a blip caused by some sort of…[Read more]

I think you are right to ask the question, as much as we need to trust the teams it is your health that is affected by the decisions they make so you need to be happy with what is happening and understand the reasons behind it.

I hope your taste buds return soon – that would be a plus! I know Phil stop liking the taste of white baguettes while…[Read more]

Hi Sarah,

The work question is a tough one but I think you are right not to rush to make a decision. You and M are like Phil and I, too young to consider early retirement but you still need to get the work/life balance right. Unfortunately/fortunately Phil had volunteered for redundancy a few months before his diagnosis. We had sold our house…[Read more]

Jeff,

I am sorry I can’t answer your question but I know that while my husband Phil has been off treatment (he had his SCT a year ago) he has still had monthly blood and urine tests when he has gone in for his Zometa once a month. These tests have been checking his paraprotein and light chain numbers as well as the other more general blood…[Read more]

Hi Sarah,

Sorry to have to welcome you and M to the forum but it is a great place for advice and support. My husband Phil was diagnosed with Myeloma at the age of 43 in May 2012. His first line of treatment included Velcade (in combination with dex and doxorubicin). A possible side effect of Velcade is peripheral neuropathy so please make sure…[Read more]

Hi Andy,

Happy New Year to you and Steph. I hope the uncharted waters of Pomalidomide are kind to you and that side effects, if any, are minimal. Keep us posted (when the forum lets you!) and fingers crossed for a good result.

Megan

Hi Stuart,

Just to confuse the IT issues a bit more I had the same problem Andy mentioned about logging in on Friday, I was on a Mac using Firefox. I was trying to post on the Newcomers forum only to be told I wasn’t logged in but when I went to log in again I was already logged in but when I went back to the Newcomers forum I was logged out. I…[Read more]

Hello Izzie,

Many people refer to the Myeloma journey as being on a roller coaster and I have found this to be true. It is my husband Phil who has Myeloma, he was diagnosed in May 2012 and after six cycles of dex-dox-velcade he had a SCT in December 2012. There have been many ups and downs along the way but one thing I found helped while he was…[Read more]